Report

Transcript

3. Report for the focus groups in Kumanovo, Shtip, Kriva Palanka, Kochani, Bitola and interviews with institutions April – October 2011 Research team Sebihana Skenderovska Slavica Kjurchiska Authors: Sebihana Skenderovska, Mimoza Velichkovski
4. 4 Acronyms and abbreviations RHP – Roma Health Program AHMI – Accountability and Monitoring in Health Initiative NRC – National Romani Centrum MoH – Ministry of Health M.I. – Ministry of Interior WHO – World Health Organization E.U. – European Union STD – Sexually transmitted diseases PAP – Papanicolaou test F.G. – Focus groups GOC – Gynecology and obstetrics clinic Contents Introduction 2 Acronyms and abbreviations 5 Project description 7 Methodology 12 Focus groups Kumanovo 25 Focus groups Shtip 35 Focus groups Kriva Palanka 43 Focus groups Kochani 51 Focus groups Bitola 59 Interviews with institutions 69 Health Insurance Fund Macedonia 72 Maternal and Children’s Health Bureau 76 Public Health Institute 83 Ministry of Justice – Department for Civil Registration 90 Ministry of Interior 93 Discussion 95 Conclusions and recommendations 107 Annexes 110
5. 5 Supporters and partners of the project Roma Health Program - OSF, Budapest Accountability and monitoring in Health Initiative - OSF, New York http://www.soros.org/initiatives/health
7. 7 Introduction
9. 9 For a longer period of time the vulnerability of the Romani woman is being dis- cussed, as well as the reasons that directly affect her health condition. However, there has been no significant progress achieved yet when it comes to improving the health, economic and social position of Romani women. Women belonging to the Romani community don’t have any conditions and op- portunities to look after their health, due to several reasons: inequality, continuing dis- crimination, illiteracy and unemployment, reality that places them on the margins of society. Unequal approach and unequal opportunities are also problems that the Romani women face in the period of pregnancy and motherhood. Reproductive health, good-qual- ity health protection, as well as social well-being in this period are extremely important in the life of every young mother. This research provides information about the percep- tion, opinions and experiences of Romani women in this period in the five targeted towns. For a longer time the NRC works on the topic Romani Woman’s Health and stands for representing the rights from this field. In 2007 we conveyed a research through direct interviews, using the method door-to-door, aiming to find out the bitterest health problems that women belonging to the Romani community face. The publication was published under the title “Romani woman’s health, path to challenges”, according to the eponymous project. The results from this research have been the basis for creating our strategies for action in the field of health-care and also establishing priorities for our present and future activities. Re- productive health as a topic was set aside as a problem due to the fact that the data ob- tained showed an alarming condition with the Romani women, who have had a higher rate of abortions, no gynecologist and no examinations for a longer time. Because of this we designed the present project that emphasizes the topic of reproductive health. Within the frames of the project “Health-care inequalities towards Romani women” a research was conveyed considering the health-care services that the Romani women receive in the period of: pregnancy delivery and breastfeeding. The discussion on this topic among Romani population was truly a challenge, since this question still represents a taboo for them. Most of the participants felt ashamed, frightened and uncomfortable to take part in the discussion and answer the questions. It is a real success that these women talked and shared their experience which, we hope, will arouse questions that should openly be asked among all of us, that will ini- tiate discussion, responsibility, and at the same time take concrete action for the benefit of all citizens, the accent being put on the most vulnerable ones. NRC
10. 10 Basic information about the project NRC has created this project with the aim to acknowledge the rights of access to health- care protection, from the economic, informative and transparent perspective through a range of activities. More specifically, the research team wanted to acknowledge from the target group (Ro- mani women in the reproductive period) to what extent the health-care services are available for them in the three periods (pregnancy, delivery, breastfeeding), how they evaluate the quality of the services and how the medical personnel treats them. At the same time, the aim was to re- view the knowledge and awareness for the right to health-care as a fundamental human right (basic health-care package and awareness for exploitation). The activities of the project are directed towards: analysis of the existing policies for health care, their application and how much and how are they used on behalf of the Romani women, as well as representing equal rights for reproductive health. When we talk about health, we must not neglect the role of the social determinants, which have a huge impact on the possibility for enjoying the law on health-care, and also its equal application among all citizens. The public expertise explains the determinants in the following way: There are significant differences in the health condition of various subgroups in the population, and the social factors are the main designators of the frequency of the diseases. In a wider sense, the social factors include socio-economic status, culture and acculturation, religion and psycho- social determinants, and those aspects from the surrounding which are a result of human activity. Even though the doctor has weak influence on the social conditions of the patient, it is important to recognize the role of the socio-economic factor and the racial-ethnical factors when determin- ing the risk factors of the behavior, availability of the health services and respecting the doctor’s recommendations because they all affect the etiology and prognosis of the disease.1 Education is, of course, a significant and easily accessible separate socio-economic indicator. Nu- merous studies2 point to the obvious connection between this indicator and the adverse health conditions and it is, to a large extent, responsible for the differences in the health status. It is these variables that are present among Romani women for decades that were incentive to do this project and to design the activities how, where and for which goal they are going to be implemented. Special challenge while performing this project was to establish co-operation with the relevant institutions on national and local level, aiming to get to the necessary information which helped to identify the defects of the existing health policies, as well as to form concrete recommendations for overcoming the aforementioned. During the research and realization of the project there were several preventive programs which were analyzed, which cover the area of reproductive health, and are financed by the Government of the R. Macedonia. 1 The Influence of social factors on the disease, Virginia L. Ernster in Principles of Internal Medicine-Harrison 2 Romani people for integration: analysis and recommendation-2005 European centre for minority issues ISBN 3-9810857-3- 6, http://ecmi.de/fileadmin/downloads/publications/Monographs/monograph_3_mac.pdf
11. 11 The following preventive programs, through which free access to health care is granted, are of special interest for the protection of woman’s health: Program for Active Health Care of Mothers and Children in R. Macedonia3 , Program to modify the Program for Active Health Care of Mothers and Children in R.M. in 20114 Program for Complete Health Insurance and Health Care of Citizens without health insurance for 20115 and Program to modify the Program for Participation when using health care for certain diseases of the citizens and Health Care of Mothers and Infants in R.M. for 20116 Program for Early Detection and Treatment of Breast Carcinoma Program for Early Detection of Malignant Diseases in R. Macedonia How and how much do Romani women use these programs is a question to which we wanted to obtain an answer for the experiences in Kumanovo, Shtip, Kriva Palanka, Kochani and Bitola. On the other hand, it is a true challenge to discuss the institutions about the way they give their services and their quality. It was a challenge to lobby the institutions to respect the time frame to agree to fill in the ques- tionnaire and participate as an interlocutor at the interviews. This fact additionally initiates concern that the institutions which conduct the health policy in this country have no feelings and are insensitive to the issue of Romani women health. The project “Health inequalities towards Romani women” is not only a short-term activity, but a long-term process which will also continue in the future. Research Goal The goal of the research was to compile qualitative data on: type and quality of services, their availability for Romani women patients which receive them in the antenatal period (period of pregnancy and delivery) and postpartum period (period after delivery) guaranteed by the Health Care Law and the preventive programs financed by the Government of R. Macedonia. 3 Official Gazette of R.M. no.6 from 17.01.2011 4 Official Gazette of R.M. no.149 from 25.10.2011 5 Official Gazette of R.M. no.6 from 17.01.2011 6 Official Gazette of R.M. no.149 from 25.10.2011
12. 12 METHODOLOGY Focus group As a technique for qualitative data compilation, focus groups and individual interviews were used. Focus groups were conducted as a series of regional one-day conferences held in five towns, where Romani women at the age from 15 to 35 years were included. Focus groups besides the rich qualitative data also incent dialogue, develop close relationship of trust with the moderator and the other participants, which enables easier identification of the problems among the participants. In every town there were two focus groups held with duration of 2 hours. In order to create an atmosphere of trust and active discussion in the focus groups there were from 6 to 15 par- ticipants. Interview The interview method was chosen as a technique due to the possibility to lead discus- sion with more representatives of institutions and health-care offices in five different towns, in order to collect data about the practical application of the laws, the function of the respon- sible institutions and the mechanisms established to provide the best possible health care. They were conducted on a national and local level, during which the accent was placed on in- stitutions whose work … the care for reproductive health in R. Macedonia. Time frame The research was implemented in three phases. The first phase began in December 2010, preparations were done to start the research. In this preparatory period data was collected about the existing laws and institutional positioning in R. Macedonia, in order to confirm the state institutions that act and influence on the repro- ductive health issue. It was also confirmed which data base will be used to identify the partic- ipants. The second phase of the research started in March, ended in June, consisting of confirming the methodology of the focus groups. There was a protocol established and a structural ques- tionnaire according to which the groups were directed. There was a selection of the partici- pants according to randomized (coincidental) numbers. At the beginning of April 2011, with technical support of the Studiorum, the protocol was finalized, as well as the questionnaire for the focus groups, which can be found in the annex at the end of this report. In this period a pilot focus group was organized, subsequently followed with realization of the focus groups.
13. 13 In the third phase the interviews with institution representatives were completed. In the beginning of August the structural questionnaire for interviews was done. After this followed the realization of these, data processing and production of the report. Pilot focus group A pilot focus group was organized to try out the understanding of the questions, as well as the acquired skills by the team which realized the research. To ensure the ef- fective leading of a focus group, the NRC team, under the supervision of Studiorum, real- ized a test focus group in Kumanovo with 6 Romani women who gave birth. The coordinator of the project, Sebihana Skenderovska, was in charge of the realization and mediation of the focus groups, and she was previously educated to realize interview with a focus group. An NRC representative, Slavica Kjurchinska, took notes from the focus groups and, at the same time, they were audio recorded. After a successful completion of the pilot focus group, focus groups were organized in Kumanovo, Shtip, Kriva Palanka, Kochani i Bitola, where the research was conducted. The reason for choosing these five towns in the research is the fact that they have a sig- nificant number of citizens who belong to the Roma ethnicity. Namely, according to the last Census performed in R.M. in 2002, in these towns live total number of 8275 Romani people. More than 50% of them are female. Kochani, Shtip and Kriva Palanka are often included as towns which are considered a part of the regions in R.M. that continually face lack of health-care personnel and access to health-care institutions. On the other hand, Kumanovo and Bitola are towns with a nu- merous Roma ethnicity that faces lots of problems. Women participants in the research make 5% of total female population members of Roma ethnicity in the reproductive pe- riod from 15 to 35 years. Until mid-May 10 focus groups were organized and conducted in these five targeted towns. To select the focus groups, an NRC data base was used which was created in the frame of the project “Campain for Education – The Key is Our Hands”7. From this data base lists were created according to the town and then generically randomized numbers were se- lected by using a computer program. The selection of women was performed n the basis of previously defined criteria of age, births and education. Women who fit in with the se- lected randomized number were invited. In case of absence, other women were invited from the same data base i.e. the next one on the list from the previously selected number. With this research 102 women were examined in five towns in 10 focus groups. In every of the towns 2 focus groups were realized. 7 Campaign for involvement of children in the educational process The Key is in Your Hands, realized in 2008/2009 on behalf of the National Roma Centrum and supported by the Roma Education Fund. During the campaign, a data base was created in 15 towns in R. Macedonia and 8.237 families were interviewed.
14. 14 Table for focus group realization Considering the sensitivity of the theme, special attention was put on the protection of personal data, on the guaranty of confidentiality and anonymity of the participants. The participants were informed about the goal of the research, the participants got confirmation from the NRC that the confidentiality of their data will be saved after which they self-willingly signed …8 for recording the discussion. The discussions of all ten focus groups were recorded as digital audio recordings and also, all audio recordings were transferred to transcripts. Data was collected at three levels: Focus groups with participants Romani women in the reproductive period, Interviews with representatives of institutions and Interviews with representatives of health-care services. Based on the protocol for focus groups9, a structural questionnaire was created which covers the areas that are the goal of the research. As for the questionnaire10 NRC has also consulted with the organization responsible for technical support of NRC when performing some of the activities of the project, with Studiorum and with the partners RHP from Budapest and AMHI from New York. For realization of the focus groups there were five people involved to inform and invite the women identified by the data base. 8 Annex 3 9 Annex 1 10 Annex 2 Date Town Focus group no. Place Participant no. 21.04.2011 Kumanovo F.G.1 / F.G.2 NRC Informative Center 26 27.04.2011 Shtip F.G.7 / F.G.8 Local Council facility 13 28.04.2011 Kriva Palanka F.G.3 / F.G.4 Rent-room next to the Roma neighborhood 15 11.05.2011 Kochani F.G.5 / F.G.6 NGO “Avena” facility 24 12.05.2011 Bitola F.G.9 / F.G.10 NGO “Bair Light” facility 25
15. 15 Representatives of institutions and health-care services In order to get a thorough analysis and better understanding of the problems consid- ering the access to health-care services, the second level of participants in the research are the representatives of institutions and health-care services. Having this in mind, in June 2011 started a consultative process for creating the protocol for institutions, as well as issues that were index for their realization. The final version was done in August 2011 when the organi- zation of the interviews started. The interviews were realized during September, October and November 2011, because some of the institutions answered the requested questions late. A protocol was created for these interviews on the basis of which a structural questionnaire was made for each of the institutions according to the role they have in the health-care system. The interviews were also recorded as audio recordings, with the exception of: Health Insurance Fund Ministry of Interior Gynecologists from Kochani and Bitola Nurse-obstetrician from Bitola, Patronage nurse from Bitola and Department for Civil Registration in Kumanovo The representatives of the institutions also signed an agreement for recording the interviews and using quotations from their statements in the research. All institutions got the transcripts from the interviews electronically and gave agreement for their use, before publishing the research.
16. 16 List of institutions During the research there were 25 interviews with participants representatives of in- stitutions and health-care services on a national and local level: Health insurance Fund of R. Macedonia, Public Health Institute of R. Maecdonia, Ministry of Justice of R. Macedonia, Department for Civil Registration, Health-care services which are directly involved in giving services for reproductive health: Representatives of Departments of gynecology-obstetrics or general gynecologists, Counseling for reproductive health and Patronage services Participants from health- care services Kumanovo Kriva Palanka Kochani Shtip Bitola Gynecologist obstetrician 1 1 1 General gynecologist 1 1 Counseling for reproductive health 1 1 Gynecological Department obstetrics nurse 1 1 1 1 Nurse/Obstetrics nurse Nurse/Patronage obstetrics nurse 1 1 1+1 1+1 1 Total / 18 4 3 3 4 4
17. 17 Areas of research Documents for editing the civil status The issues from this area were placed in order to get information how many of the Romani women from the focus groups have personal documentation, what is the main prob- lem in the process of obtaining personal documentation and what, according to them, are the possible solutions that will relieve the process of obtaining the documents. Experiences in the period of pregnancy The issues from this area were directed to the examination of habits and attitudes of the Romani women considering the realization of the health-care protection during preg- nancy, perception of the health-care protection quality and the behavior of the health-care professionals towards the Romani women. Experience in the hospital during delivery The issues from this area were directed more to the behavior of the medical per- sonnel towards the Romani woman and the perception of existing discrimination in relation to the other nationalities during delivery and stay in the hospital. The hygienic conditions in the health-care institutions – gynecological departments The issues from this area were directed to examination of the perception of the con- ditions at the Departments for gynecology and obstetrics in relation to fulfilling the sanitary hygienic normative, which affects the health-care protection quality in the period right after delivery. Services in the postnatal period and neonatal care The issues for services in the postnatal period and neonatal care were directed to the examination of the quality of the services that the polyvalent patronage service gives, through the realization of the “Preventive program for mothers and children”.
18. 18 Results Administrative taxes and documents for regulation of the civil status Kumanovo, Shtip, Kriva Palanka, Kochani i Bitola In this area the issues, according to protocol, were directed to examination of the pos- session of personal documentation, as a precondition to implement the basic human rights and the possibility to implement health-care rights. At the very beginning, the moderator ex- plained what is understood under personal documentation (birth certificate, ID card, citizen- ship certificate, marriage certificate). Also, it was pointed out to the participants that a medical card and health insurance are doc- uments for exercising rights from health care and that they are forms issued by the Ministry of health in collaboration with the Health Insurance Fund. All participants in the focus groups from five towns declared that they possess personal doc- uments. Their children were registered in the registries of births and have documents with the exception of only one woman from Kochani6. It is a case of twin delivery, born during trans- port to Skopje, and therefore the administration, from unknown reasons, did not want to reg- ister them neither in Skopje nor in Kochani. In Kumanovo, part of the participants said they got the documents through NRC with its help. In all towns, the women participants in the focus groups consider the administrative taxes needed to obtain personal documents high for their standard, especially women from other towns which further increases the expenses. Such cases are recorded in the focus groups from Bitola, Shtip, and the largest number are identified in Kriva Palanka. A problem was noticed among most of the participants who, due to renewal of documents from the social service, stay without birth certificates and have to apply for a new document over and over again every six months. Participant from Shtip: “It’s expensive…for example, those who receive social support are sup- posed to pay 200 denars for documents, and receive only 2000 denars social support. With this money you can buy milk for your child for two days.” Participant from Kochani: “They are expensive for people who don’t work, when you don’t have money – it’s expensive.” Health insurance Out of 25 total participants in Bitola, 18 have health insurance i.e. blue cards, and all of them possess a medical card. The reason for not having health-care cards is that they didn’t apply on time in the Agency for employment. Participant from Bitola: “We are illiterate, they give us the date when we should apply, but we replace it by mistake and they erase us from the computer base and then there is no medical treatment for us for a whole year.” In Kochani, Kumanovo and Kriva Palanka the situation is better, with only one partic- ipant lacking health insurance, while in Shtip all the participants have health insurance. How- ever, 80% of the participants still consider that they don’t gain anything in particular from the health insurance, because they have to pay participation for the medical examinations and
19. 19 medicaments. It is a fact that the amount of participation when one has health insurance is lower in relation to using the services without health insurance. Although it is truly a small amount, some of the participants cannot afford to pay it. Participant-Kumanovo: “Not much, in the end you still have to pay, there is no use of the insu- rance.” Participant-Shtip: “We pay even though we have cards, some medicaments are cheaper, other more expensive, you can’t use them, again we pay, we have to take medicaments.” Social security and child support Out of total 102 participants, 45 are beneficiaries of social security or child support. In terms of distribution by towns, they are as follows: In Bitola there are 8 social support users in the time period of use from 3 months to 12 years. In Kochani, 17 participants are users in the time period of use from 3 years to 15 years. In Kriva Palanka, out of 15 participants 11 use social support in the time period of use from 1 year to 16 years. Shtip – 1 In Kumanovo, out of 26 participants 8 use social support in the time period of use from 8 years to 18 years Dependence of the participants from social support All the participants consider that social security is not enough to satisfy the basic living needs and its irregular payments are an additional problem. Participant – Bitola: “We use social support of 1000 denars, we are 8 people in the home, we can’t do anything with it.” Participant – Kumanovo: “Even what we get is irregularly given, one month we get it, then two months we don’t get anything.” Total number of participants Social security or child support users Representation in the group in percents Kumanovo 26 8 30,7% Kriva Palanka 15 11 73,3% Bitola 25 8 30,8% Kochani 24 17 70,8% Shtip 13 1 7,7%
20. 20 Larger number of the participants pointed out that their social security was terminated due to seasonal work, usually in the period May – September and due to late renewal of outdated documents, which are necessary when applying for social security. Participant – Shtip: “We had it terminated because my son was included in monitoring the elec- tions through Most, which was several years ago.” Partcipants – Bitola: “…if I prepare documents I will starve to death, while I am preparing them my kids will ask for food. We go to fields, collect bottles, everywhere we can… We go to the villages, I went to Resen to work, when the commission didn’t find us at home and terminated our social support, we gave 300 denars to renew the documents, I haven’t received social support for 6 months so far.” Educational structure of the participants Education The participants in the focus groups pointed out that not having education is an addi- tional difficulty when employing. This demotivates women in their job search. At the same time the prejudices and the negative perception towards Romani people makes the possibilities for employment even more difficult. The participants have shared personal experiences where the prejudices of the employers in relation to the working habits in Romani women are a rea- son not to employ them. '! "# # ,0 2 -* 14 % " +/ ++ 1- -4 &# ,/ 2 -* 24 #( " ,. +1 1* 24 & $ +- + 1 14 Bitola Kochani Kr. Palanka Shtip Kumanovo Higher education Illiterate Secondary school Primary school Incomplete primary school
21. 21 Participant – Kochani: “Some have complete primary school, and still can’t find a job, here in Kochani, I don’t know what can this law be, I’ve been looking for a job for two months and didn’t get one, every day I went door to door, but couldn’t find a job.” Participants – Shtip: “I was employed in apparel manufacture 2-3 months ago, they look at you what you are wearing, how you behave, keep telling you are a Gypsy and that is why they won’t give you a job.” “It is a fact that there is discrimination, I think that in the clothing factories it’s important what kind of a worker you are, if you are regular at work, if you produce more than the norm he doesn’t mind, I used to work in apparel manufacture and so I know it.” “I think that education and inexperience matter. Shtip is a clothing-industry town, experience is required, I have no experience to work and I don’t know if it is a barrier to work that I am Ro- mani.” Participant – Kumanovo: “They don’t employ everywhere, for example if you are a Romani woman, no one wants to give you a job in a shop for baked goods.” Socio-economic status on the basis of employment , " & ,*2 ) $#)% -* #")* "#.# -* "!# "#0 -* .,% "#0 1#.%,% "#0 +*!#3# ,#(#)% .%+ 68 ; 9 6 6 6 6 , ' )& 6: 8 7 ; 9 7 , " & ,*2 ) $#)% -* #")* "#.# -* "!# "#0 -* .,% "#0 1#.%,% "#0 +*!#3# ,#(#)% .%+ 68 ; 9 6 6 6 6 , ' )& 6: 8 7 ; 9 7 /( )*!* 7; : 9 ; < 8 9 %.*' 7: 6 : 66 ; 7 6 Bitola Kochani Kr. Palanka Shtip Kumanovo Employed Unemployed Use social security Total participants
22. 22 Number of children Town Total no. of women With one child With two children With three children Four children More Pregnant Shtip 13 6 4 1 1 1 1 Kriva Palanka 15 3 2 6 4 / 2 Kumanovo 26 5 4 6 7 3 4 Bitola 25 1 5 11 6 2 1 Kochani 24 1 6 14 1 2 2 Total 102 16 21 38 19 8 10 15,7% 20,6% 37,3% 18,6% 7,8% 9,8%
25. 25 Focus groups Kumanovo
27. 27 Access to health-care services in the period of pregnancy and attitude of the health-care personnel towards Romani women – prenatal protection In Kumanovo there were twenty-six Romani women participants, out of these twenty- five have a chosen gynecologist, one doesn’t because her last delivery was five years ago and then there was no legal obligation for a chosen gynecologist yet. Three Romani women didn’t get a mother’s card11 because they had no personal documents in the pregnancy period, didn’t get one although she went on regular check-ups or because she went for a check-up at her gy- necologist only once in the pregnancy period. The remaining twenty-three participants said they had paid for the mother’s card, which is against the Health-care protection law that provides free preventive examinations and a mother’s card. The participants told us they had regularly been going on preventive examinations during pregnancy, but only a few of them went on more frequent examinations, and only when needed. It’s worth mentioning that two participants performed the regular check-ups at another doctor, not their chosen gynecologist, which indicates that the participants are not satisfied with the services from their chosen gynecologist and they don’t trust him. The reason because of which the other participants continued going to their chosen gynecologist was the financial limita- tions that their families face. It’s interesting to note that eleven participants expressed distrust in the expertise of their cho- sen gynecologist and weren’t satisfied with his attitude. Some of them were willing to change the gynecologist, but they didn’t know the procedure. “He doesn’t give any advice on how to behave, what to eat, what to use during pregnancy, noth- ing of these and that is why I am dissatisfied”. “Two years ago I got pregnant and went to see him…my period was late…I was feeling pain in the kidney area. I had ultrasound and he said: ‘You have a kidney disorder’,…and I was pregnant, he gave me some tablets for the kidneys…I did a pregnancy test and then I went to see him and I told him ‘I’m pregnant and you give me medicaments to take’. And he replied ‘Love, well, I don’t know…’ ‘Give me’, I told him, ’a referral for an abortion’, and I went to the second floor and aborted the child”. The participants from both focus groups in Kumanovo informed us that when they visited their gynecologist during pregnancy, most often they got ultrasound examinations. Extremely rarely they were referred to undergo laboratory, bacteriological and microbiological tests, pro- vided by the antenatal protocols12 for antenatal protection. Three of the participants haven’t done blood tests during pregnancy at all, with that increasing the risk for their health and the fetus they were carrying. 11 Mother’s card is a document given by the chosen gynecologist. In it he notes all the examinations, tests and therapy that the doctor prescribes to the patient during pregnancy. The mother has to have this document with her when she goes to give birth. 12 http://www.moh-hsmp.gov.mk/fileadmin/user_upload/Dokazi/Upatstva_WEB_crop.pdf
28. 28 Five participants from the focus groups had a spontaneous miscarriage; it’s surprising that the reason for the loss of the fetus wasn’t explained to any of them, although it’s the doctor’s duty to tell the patient. Experience in the hospital and services received during labor The issues, according to protocol, were directed towards the admission of the women in the hospital, who admitted them, what kind of examinations were performed on them and what is their satisfaction from the received services? It’s important to note that in both focus groups in the town of Kumanovo there were partici- pants that gave birth five years ago, but also some who gave birth recently and so it wasn’t possible to compare experiences before and after the privatization of the gynecological offices. When they went to give birth, the majority of the participants were immediately admitted to hospital, but some of them experienced being turned down by the gynecologist obstetrician after a performed examination. The decision to be rejected was supported with the argument that it was too early for delivery, neglecting the fact that the woman had high blood pressure and/or her water broke: “I had been turned down all the time, 4-5 hours left to wait in front of the department entrance, telling me ‘it’s not time yet, come again later’, and my water broke, I had no contractions, but I had high blood pressure.” “I wasn’t admitted, they were watching the TV series ‘Kasandra’. My husband was calling them over, eventually I gave birth in front of the door and then they yelled at my husband ‘why didn’t you tell us she was ready, that she was in labor’”. The experience that most of the participants from the focus groups faced, after being admitted to the GYN-OBS department, was that they were left to put up with pain for a longer time. “My water broke, she gave me an injection, I had no pain, three days after they gave me an infusion and I gave birth. After the received therapy I didn’t feel anything, neither the pain nor the delivery, I really went through so much trouble.” When asked “How satisfied are you with the services and treatment you received from the doctors during labor and stay in the hospital?”, from total of 26 participants 8 said they were satisfied with the services and treatment from the medical personnel, while twelve par- ticipants said they were not satisfied or shared negative experience during their stay in the hospital. Only six of them had no comment, which points to fear from open discussion about their experiences with the doctors. As a reason for the inappropriate treatment a problem was identified of not having “familiar” people in the hospital that would intervene for them. It’s interesting to note that the partici- pants don’t make a connection between their ethnical affiliation and the quality and treatment of services they received during their stay in the medical institutions. The only connection be- tween their ethnical affiliation was seen in the case when someone from the medical personnel would address them as “CHAE”13 , which was degrading for them. This contradictory opinion shows that discrimination is present in their everyday lives and so, in certain situations, one cannot recognize it as a reason for inappropriate approach. 13 Chae in Romani language means girl.
29. 29 When asked what was the behavior of the nurses like, the participants shared different expe- riences. Most of the participants answered that it depends on the fact which nurse will be in charge of the shift. Out of 26 total participants, 10 shared an experience that they weren’t satisfied with the way the nurses behaved to them. “I had an argument with one nurse, she yelled at me ‘why do you need to have so many children’, and I was with strong contractions. But, when she told me that I even forgot about the pain, we started arguing. This happened with my third child, no one said anything when I was with the previous pregnancies”. The participants had to give the nurses treats, as a sign of gratefulness, but sometimes it was meant to be only in order to get to clean bed-sheets, or so that the nurse would take better care of her. Nineteen participants said they were satisfied with the way the nurses took care of the babies while they were staying at the hospital, and six said they were dissatisfied. “They didn’t want to come and see my baby, his nose was blocked. I was sleeping because I hadn’t slept at all after delivery and then the women staying in the same room woke me up to tell me that the baby was suffocating. I went to tell them, they didn’t want to come and see what was the problem, they said ‘stay in the room, we’ll get there’, and my baby was suffocating, I couldn’t breastfeed him, the nurse won’t come when you call for her.” All the participants paid for the therapy they received in the hospital. Opinion about the hygienic conditions in the health-care institutions – gynecological departments The general conclusion is that the hygienic conditions don’t correspond to the pre- scribed standards, the food has bad quality and taste and because of this they didn’t consume it. The conditions for keeping personal hygiene in the hospital were also unsatisfactory for all the participants, and one of the biggest and most frequent problems was not having hot water for bathing. The participants also pointed out that they were accommodated in rooms with mothers from other ethnical communities. Participants’ opinion about the postnatal care services All of the participants stated that they were regularly visited after delivery by the pa- tronage nurses, and that the advice given to them was really useful.
30. 30 “I didn’t know about the second cloth diaper, what and how I should apply it because in the hos- pital they didn’t tell us anything, so the patronage nurse taught me.” In the end, the participants recommended to cut off the financial participation for medica- ments, to educate the doctors continually so that they can offer health-care protection to their patients with good quality and in time. At the same, to control the gynecological departments in continuity. Representatives of health-care services As it was mentioned before, the research team did interviews with representatives of the health-care services, aiming to acknowledge their opinion in relation to the services and at- titude they have with the Romani women as their patients. The opinion of Dr. L.J., gynecologist – obstetrician at the GYN-OBS department in Kumanovo, is that the spatial layout of the health-care institution itself doesn’t fit into the recommended stan- dards for such an institution. On her behalf, she said that in the department there is significant attention paid to hygiene in order to eliminate the possibility of intrahospital infections occur- rence. On the other hand, the delivery room is renovated and inside there are separate, clean maternity stalls which ensure intimacy during birth. In the Health-care institution in Kumanovo there are, on average, about five patients that give birth daily. Every secnd day among the patients there are Romani women, which on annual basis stands for 15% of the total number of mothers giving birth in the present year. The basic documentation that the patients need to have when admitted for labor are: blood analy- sis findings from the previous month, blood type and an ID document necessary to register the baby in the Department for Civil Registration. The document for identification is needed because recently there were cases of misuses of personal health-care cards. As a consequence of such an act, the hospital also registers the baby to someone else’s name, in the Department for Civil Reg- istration they continue the procedure, which represents criminal offense. When a patient comes for delivery, the first examination is performed by a specialist doctor gy- necologist – obstetrician, whereas the administrative part is done by the obstetrics nurse. The services given during admission are: CTG, ultrasound and a gynecological-obstetrical examina- tion. The delivery is lead by the obstetrics nurse if it is a case of normal spontaneous delivery, while the gynecologist – obstetrician takes part in the surgical interventions that are supposed to be done. When it comes to communication with Romani women, Dr. L.J. says that so far she hasn’t had language barrier problem while performing delivery because the instructions during labor are simple and understandable. From her practice she shares the experience that one problem that is imposed on women is the lack of prenatal preparation which is excessively important, since it relieves the delivery, and is a handicap for all women. One problem that is especially prominent in Romani women is un- controlled pregnancy and lack of necessary laboratory analyses. Dr. L.J. “There are problems in the sense of unintended pregnancy, they don’t do control check- ups regularly, they don’t have laboratory analysis from the last month of pregnancy (one month before delivery), they don’t have blood type. I don’t want to put this up, but more than 50% of
31. 31 them don’t know their blood type. As an advantage, I must say they have some genetic predispo- sition to give birth easily.” Dr. L.J. also shares her experience that only some of these women have mother’s card, and even for those who have it, the card hasn’t been used properly. From the practice and according to the opinion of Dr. L.J. as postnatal health problems in women belonging to the Roma ethnicity she points out anemia as a result of irregular check- up examinations during pregnancy. Dr. L.J. also works in the Counseling for reproductive health which is open and free, but she is not satisfied with the response: “Although we try to our maximum, it is still not working on the level we would want it and expect it to work”. The Counseling was also visited by Romani women who, most often, asked for advice about dysmenorrhea, painful and irregular menstruation. Apart from functioning as an informative center, the Counseling also offers free material advice for contraception and medicaments for such way of protection. The coordinator of the Counseling adds that its target group are, first of all, young people, ado- lescents, but adults can come, too. Dr. R.M.S. is, at the same time, representative of the preven- tive health-care institution “Public health-care center” where, besides other activities, she works on collecting data from all health-care institutions, no matter if they are public or private, in relation to morbidity (diseases) the health-care institutions face. However, they still can’t inform about the morbidity of the Roma population. “The data we collect from the health-care institutions don’t divide patients according to nation- ality, so I couldn’t tell you more about the health condition of the Romani women”. According to the statement of the obstetrics nurse from the gynecology department, every mother that is about to give birth and comes to their department is supposed to have proper documentation, so she needs to have a valid health-care card, an ID-card and health insurance cards from the current month. But, if it’s an urgent case, the patient is admitted, no matter the documentation which is regulated afterwards. When there is a lack of documentation, the pro- cedure for the expenses goes through the social security service. The patients that stay in the hospital during pregnancy have to pay bail, but that’s not the case if it is a child birth in ques- tion. The obstetrics nurse shares a positive experience with the Romani women during delivery and, in her opinion, she says there is no language barrier. “To tell you the truth, Romani women listen to our recommendations, we don’t have a problem with them, so they come and give birth quickly. At the department we don’t have problems with them when it comes to breastfeeding, when they go home, they also breastfeed well”. She mentioned that sometimes there are conflict situations with the Romani women after de- livery, during their stay at the hospital. There are situations when the women complain and they aren’t satisfied with the attention paid by the personnel.
32. 32 “Yes, I understand them, sometimes there is conflict, they tell us ‘you don’t take care about us be- cause we are Romani women’, sometimes it does happen, if we are crowded, in such situations we cannot pay attention enough, but no, we don’t have so many problems”. The obstetrics nurse also confirmed that the Romani women not always have a mother’s card, but she thinks that is an individual thing and it depends on the person, how much attentive she is during pregnancy. In her opinion, lately more and more Romani women have a mother’s card. In the patronage service there are 26 patronage nurses who offer preventive health-care serv- ices in the town, suburbs and the villages, so they cover the total population of about 120 thou- sand inhabitants on the territory of the municipality of Kumanovo. Every nurse has its region, which means there are nurses that cover the area where mostly Romani population is located, like Sredorek, Bavchi and one part of the suburb Banevo Trlo. There are about six patronage nurses that get into everyday contact with the Roma population that lives in the center of the town and in the Roma suburbs. The preventive services of the patronage health-care mostly cover: newborns, young pre-school children and adolescents. The polyvalent service also in- cludes giving preventive health-care services to women in the reproductive period. Special at- tention is paid to pregnant women considering that the women, belonging to the Roma ethnicity, get married at an early age. The patronage nurse thinks that this health-care service is compulsory for them. The newborns, in 99% of the cases, are visited right away after being released from hospital and this visit is considered the most important one, according to the nurse. With the Roma population there is a problem to accomplish this task since they face the problem with the wrong address. “…so, if we don’t find the mother i.e. she moved to another address…large number of the Romani women get married young…relatively rarely do they get married in the legal frame…this is the only type of problem that can be a reason for a late first visit. Otherwise, the first visit is right after leaving hospital and is the most important. Because it has to be immediate and the mother is still not aware that the child exists and what kind of care it demands”. The language barrier as a problem doesn’t exist, but another problem the patronage services face is the application of the given advice. According to the nurse, one reason because of which the Romani women don’t fulfill the given advice are of financial nature, but sometimes it de- pends on the individual interest of the Romani woman. L.I.: “I think that there is no such thing as language barrier when communicating with the Roma population, or if there is, it is relatively small. We understand each other in general. What we ad- vise and how much of it they apply in practice, of course depends on their financial possibilities and we are aware of that. But, first of all, it depends on their interest…What is the reason for this and what is it connected to is an issue about which we should discuss”.
33. 33 According to the opinion of nurse L.I., one big influence is that they usually live in families with more members from more generations in one place. Also, the nurse points out the problem with the regularity in immunization of children which has always been an issue in the Roma population, although lately there has been improvement in the scope of Romani children with the compulsory immunization. According to her opinion only one part of the Roma people, approximately about 50 – 60% of the Romani women, have a health-care card. L.I.: “If the parents don’t have proper documentation, in the future it is difficult for the children as well to get the needed documents. And then there is another problem, connected with their health, with the health problems they are going to have to cope…” A significant number of the pregnant women, belonging to the Roma ethnical community, have a mother’s card, which means they have a chosen gynecologist who they visit, although not so often as it is important. “Usually when they get pregnant in the first couple of months and in the last month or two of their pregnancy. This shows they don’t follow the rhythm of regular control examinations which they should. Sometimes it happens that the women hadn’t had a single visit during her whole pregnancy, if she went for a visit, we know that the mother’s card is issued in the seventh/eighth month of pregnancy”. The patronage nurse considers that the health-care institutions generally offer health-care services to the whole population, within their capabilities, depending on their professional ex- pertise, the supply of equipment and instruments for work, but emphasizes the need to im- prove the communication with the patients and, of course, with the Roma people. L.I.: “Sometimes a single warm word is all that it takes, one good gesture, a smile on the face and in your eyes. Sometimes this communication is extremely important. For the Roma people and for the other patients.”
35. 35 Focus groups Shtip
37. 37 Access to health-care services in the period of pregnancy and attitude of the health-care personnel towards Romani women – prenatal protection The issues from this area, according to protocol, were directed to the examination of the exploitation and the perception for the quality of these health-care services by the Romani women, as well as the degree of information about the range of the services. What was exclusive about the town of Shtip was that in one of the focus groups the participants were employed, and in the other group the women who took part were unemployed. All the women from the focus groups stated that they have a chosen gynecologist. Bigger num- ber of the participants, especially the more mature by age preferred a female doctor, since then they felt more relaxed during the examination to ask and inform about everything they want to know. When asked whether they possess a mother’s card, a larger number of the participants gave a confirming answer, with the exception of two women because their last birth was more than five years ago and then there was no regulation for a compulsory mother’s card. They were pleased with the attitude of the doctor towards them, they consider it correct and feel equal with the other women who don’t belong to the Roma ethnicity. “Correct behavior, I’ve felt equal everywhere, I’ve never been neglected when waiting in a queue… I’m satisfied…you are explained everything…” “It’s a different thing when a woman performs the examination, when it’s a man you get confused and you don’t know what to ask, you just nod your head”. “He is looking at me and he can tell that I am ashamed and he says to me I am a doctor, there’s no need to be ashamed, this is my job. We used to be like that before, but now even the women are more relaxed and they don’t see the examination as we do”. When asked “How often have you visited a gynecologist during pregnancy?”, the most frequent answers were like “I went regularly”, “I went every month”, “more often than necessary” or “I went too often”. According to this, it can be stated that the participants in the research in Shtip have regularly performed control examinations during pregnancy. Yet, two of the participants said that they visited a gynecologist during pregnancy only to confirm the state and when they gave birth. The preventive examinations during pregnancy, according to the statements of the women in the focus groups, would most often encompass a control blood analysis, blood type determi- nation, ultrasound (echo) examination. A control blood analysis was performed twice to three times. In women suffering from anemia even more often. They were charged for these pre- ventive examinations. Of all the women participants in the focus groups, only one woman men- tions i.e. “knows” about the free PAP test which is supposed to be done at least once a year. Out of total thirteen women, four have had an abortion during pregnancy. These women said they didn’t know the reason for the abortion, nor have the doctors explained it to them.
38. 38 Experience in hospital and services received during labor When asked what was the attitude of the medical personnel after being admitted at the GYN-OBS department to give birth, out of thirteen participants three said that they were not satisfied, six were satisfied with the admission and the way the services were given to them, and four shared experiences only about the attitude of the doctors towards them. “At that moment, nothing was important to me, only the pain and my baby.” According to the participants, the attitude of the doctors towards them was correct, but the behavior of some nurses was bad, and some of them were professional in their job. When asked whether the nurses don’t treat them well because they are Romani women, one participant answered: “No, it all depends on that which nurse will be on shift that day. If she is not a pleasant person, she yells both after Macedonian and Romani women equally.” “The nurses are more arrogant, they consider themselves more powerful even than the doctors, you can’t ask a single question, if you ask why is she giving you that injection, she answers back ‘you ask too much, lie there’”. The participants are not satisfied with the attitude of the obstetrics nurses during labor time. Their personal perception is that they yell at them too much and treat them badly: “When you are making the baby, it feels good, and now you are complaining, that’s what they tell us”. All of the women shared the experience that they were accommodated in rooms with mothers from other ethnical communities. But they noticed that the patients who come from famous and wealthy town families had privileges and got better services than the rest of them. All the participants paid for therapy they had to receive in the hospital after delivery. “There is no separate room for Romani women, but for daughters of managers, or daughters-in- law, for them there is special treatment, they go in another room, their closest family can get in the rooms and they can see the babies, and for the rest of us there is only one small window and we have to peek through it”. “If you know certain people, you can get visiting time longer than five minutes, grandmothers, grandfathers get inside, even neighbors visit them. And for us, neither our mothers nor fathers can visit us”. Opinion about the hygienic conditions in the health-care institutions – gynecological departments The general conclusion is that the hygienic conditions don’t comply with the prescribed standards, the food has bad quality and taste and because of this they haven’t consumed it. The participants shared their experiences that they had hot water in the hospital for bathing. All the participants agreed that the hygiene for babies is better, compared to the other depart- ments, but not enough.
39. 39 In the end, the participants recommended a continuous monthly availability of the medica- ments which are on the positive list of the Health Insurance Fund; functioning of the One-Stop- Shop System in order to decrease the material expenses when applying for a birth certificate in other towns, since very often mothers from Shtip are sent to give birth in other towns in R.Macedonia. As a recommendation for the patronage services they express the need to increase the number of visits in the neonatal period of the newborns. The participant’s opinion about the services from the postnatal care When it comes to the services that the better-quality patronage service offers, the women stated that they are satisfied, and they classified the advice they get as useful and very useful. The women also stated that they are pleased with the experience with the patronage nurses and that the advice and services they give them during the neonatal care are useful. All the participants were visited by the patronage nurse twice to three times during the first year of the baby’s life. Representatives of the health-care services According to the statement of the gynecologist from Shtip, there are three Romani women that give birth weekly in the hospital. The services are available at the same level as for the patients from other nationalities, the women are not turned down even if they don’t have a referral. The administrative work around the admission of the patient for delivery is performed by the nurse and the doctor, a gynecologist-obstetrician performs the examination. The delivery can sometimes be lead by an obstetrics nurse if it is a case of normal pregnancy and normal delivery. The doctor considers there are no problems in communication because, if he notices they don’t understand them, he explains them again and simplified. “So far there have been no problems which came up from misunderstanding between the doctor and the patient”. As the most frequent problems that the Romani women face during birth, the gynecologist emphasizes anemia and sometimes EPH gestosis which appear due to an early marriage and early giving birth. Because of this, the doctor thinks that the Romani women should go to ex- aminations more often, although 90% of them visit for control examinations regularly. As a problem that the Romani women face during pregnancy, the gynecologist emphasizes the in- sufficient information they have about the administrative procedures when exercising their right to use services in their chosen gynecologist’s office, as well as the late distribution of the health-care cards. The doctor also pointed out cases where the woman calls in for delivery, but she still doesn’t know who her chosen gynecologist is. The doctor also stressed that the mother’s card is not to be paid for when it is issued to a pregnant woman.
40. 40 The polyvalent patronage service acts as a separate department in the Health-care Office in Shtip. 60% of the visits are directed towards mothers and children, no matter if it is a newborn, pregnant woman or a woman in the reproductive period. According to the “Pre- ventive program” which they follow, pregnant women are visited twice in the prenatal period, and the risk pregnancies even more often. In the patronage service they emphasized that there is a special attention paid to identify pregnant women who haven’t visited a gynecologist at all. Most often, these are cases of women who get married early, live in a wedlock, have no health insurance or come from another town. From their own practice, the patronage nurses share experiences of visiting women and their babies five times, after birth, during breastfeed- ing, before the baby’s first birthday. According to a statement of a high nurse, the Health-care Office has, from this year, put separate means aside, intended for visiting children and women of Roma nationality, as families with risk. One of the activities of the patronage service is to educate on the topics: contraception, who is a chosen gynecologist, what is his/her role and when to visit him/her. The nurse pointed out to some of the results which she had got while writing her M.S. thesis “Public health determi- nants that affect the sexual and reproductive health of women in the municipality of Shtip”, and relates to Romani women. She says that the women belonging to Roma ethnical community had little knowledge about the sexual and reproductive health, less compared to the other women belonging to ethnical communities. They had no information about what is a PAP test, what are their rights according to the preventive programs, the right to a free PAP test once a year, breast examination at their GP etc. This nurse believes that education is a key segment where we should act for the Romani woman to become conscious how important is her health. Education will then improve other segments of life as employment. “Along with education goes everything else. So, they are unemployed, depend on others, depend on their husbands, depend on one salary. They have to ask for money to visit a chosen gynecologist. If you don’t have the means, of course that you won’t go. There is a small number of examples who have many children, 7-8, they take care about them and can’t leave them to come, for exam- ple, for a vaccination.” The patronage nurse E.O., who does field work with primarily Roma population involved and is also part of the Roma ethnical community herself, considers that with her presence and communication there is improvement when it comes to exercising the rights from preventive protection for Romani women. She identifies the success in the increased number of Romani women who have: a health-care card, a chosen general practitioner, a mother’s card etc. E.O. shares her experience: “As a patronage nurse, every time I advise family planning, education, getting employed and how to take care of the children.” She also points out that the most frequent problem she has noticed during field work were the social problems and discrimination that the Romani women face when looking for a job. One thing which especially turned our attention in this town was the course for prenatal prepa- ration which works within the GYN-OBS department. On annual basis, around 700-800 women
41. 41 visit this training, but the number of Romani women that visit it is very small. Nurse S.L. says that the course is noted inside the mother’s cards. For her work and the experience of the women that have completed the course the nurses say that this prenatal preparation helped women a lot to overcome their fear and go through an easy child-birth. “I have more than 100 messages from mothers who have been here, their impression is that the classes are really useful. If there was no use, they wouldn’t attend.” The work education for the medical personnel in the area of prenatal preparation was imple- mented for units in 32 towns in Macedonia. “Everyone is educated, and with the concessions some cannot perform practice because the nurses are with them, too. But this is what we have certificates for. Some nurses weren’t allowed to work, they didn’t have a certificate”. The opinion of the nurse is that the attendance of the Romani women must increase, which could be achieved by appeals from the NGOs and the patronage services.
43. 43 Focus groups Kriva Palanka
45. 45 Access to health-care services in the period of pregnancy and attitude of the health-care personnel towards Romani women – prenatal protection All the participants from the focus groups have a chosen gynecologist with the excep- tion of one woman who, from administrative reasons, was still registered in her previous town. All the participants have mother’s cards. They go to preventive examinations once a month, even more often, when they have problems. Only one participant stated that she goes to the doctor when she has money. The participants say that the chosen gynecologist behaves well and explains everything they want to know. One of the participants was dissatisfied, she considers the attitude of the doctor humiliating because when she visits the office other people get in line in front of her. Another participant considers that the doctor doesn’t prescribe the needed therapy on time. “I have one complaint, when Romani women go for examination, the doctor always underesti- mates us, they don’t let Romani women enter when they are supposed to because we are not dressed up, we never have priority”. Then again, another participant has the opposite meaning: “My doctor is great, I get examined right away…” The doctors regularly charged them for every examination during pregnancy and considering that these women come from socially vulnerable families, they were often in a situation not being able to pay for the examination. In that case, the doctors told them they would wait so when they can, they’ll pay. Due to such “services”, they feel satisfied with the attitude of the medical personnel. During the preventive control examinations at the chosen gynecologist while they were preg- nant, nine participants in this research did blood analysis test only once, and the rest several times (2-3 max.). Only one of the women did the tests every month due to an established ane- mia condition. From the provided preventive antenatal examinations, nine participants said they had an ultrasound (echo), and eight a gynecological examination. The participants also said that they had their blood types, weight and blood pressure determined. Six participants told us that they paid for the examinations and two of them because they didn’t have health- care cards (health insurance). Two participants shared experiencing the loss of their babies in the ninth month of pregnancy, and one of the participants had a miscarriage in the beginning of her pregnancy. All of the women said that the doctors didn’t explain the reason for losing their baby. Experience in the hospital and services received during labor What we can notice in the focus groups from this town is that more of the women came from other towns. It’s important to state that in the town there is no legal GYN-OBS de- partment, but women give birth with the help of an obstetrics nurse. Due to a lack of personnel, many of the women are sent to give birth in Kumanovo or Skopje. Because of this, almost every woman had the experience of giving birth in two different health-care institutions. This
46. 46 is one of the reasons that these women later on face problems when they want to obtain a birth certificate for the babies. (Law on Civil Registration. The birth of a child has to be regis- tered within 30 days from the day of birth, in the area where the child was born). From the ex- periences of our participants we can compare the work done and the services offered in three health-care institutions in three different towns. “I didn’t have any problems with my first child, I was sent to Skopje, got admitted, with the second child the doctor thought it was too early. After a week, I felt that I was about to give birth, in the eighth month I got contractions, they didn’t admit me, they told me it was normal to be dilated 1 finger. I was scared because previously I had lost a child. They told me ‘when the time comes you’ll give birth’. But I was afraid, I asked for a referral for delivery in Kumanovo. So it was, it happened the next day, and the doctor didn’t believe me, he didn’t calculate my due date precisely…” “In Skopje when I gave birth, the doctor who delivered my baby was arrogant and yelled ‘you make children at the age of 13-14’. I was 18 when I had my baby. In Kr. Palanka with my second child everything was all right, the nurse even offered to make me coffee, with my third child in Kumanovo the doctor praised me, said that I was very conscious and said ‘when everyone would be like you, it would be great’.” The participants who delivered their babies in Kr. Palanka during labor had only a nurse by their side due to the aforementioned problem with the lack of a gynecologist at the Obstetrics department. “I went to the hospital, the hospital in Kr. Palanka was being renovated, because of this they sent me to Kumanovo, I was immediately admitted there.” “I didn’t get admitted because there was no doctor, one was in Turkey, the other one in Skopje, they sent me with an ambulance to Kumanovo, the obstetrics nurse didn’t accept the responsibility to deliver my child on her own.” “I was admitted right away, the obstetrics nurse delivered my baby”. Out of total 15 participants five weren’t admitted in the hospital immediately, and five had the experience of being redirected to give birth in another town. When asked how satisfied they were with the attitude of the doctor, who is also their chosen gynecologist, 14 said they were satisfied and 1 that she wasn’t satisfied. The participants didn’t experience being asked for a bribe from the medical personnel. When asked whether they are satisfied with the attitude of the nurses towards them, seven answered they weren’t satisfied, two didn’t have an opinion and five said they were satisfied. “She yelled at me “jump on the ball”. There is one big ball, if you are carrying your baby too high, she gives you the ball to jump on it so that the belly would go lower…she sits there and doesn’t help you, just throws the ball at you, doesn’t explain anything and yells “come on, jump on it”, and you are in contractions”. “The nurse didn’t allow me to take a shower before labor and told me that I should have taken a shower at home. In Kumanovo it’s better”.
47. 47 All of the participants expressed satisfaction about the way the nurses treated their babies. “They keep asking you if you feel pain, they are very nice, so that you don’t need to stand up and call for them. The room is warm, comfortable.” Opinions about the hygienic conditions in the health-care institutions – gynecological departments General opinion of the participants who gave birth in Kr. Palanka is that the hygienic conditions are satisfactory and the food is acceptable. The participants said that in the hospital they had hot water for bathing. All of the participants agreed that the way in which the hygiene of the babies was performed was also satisfactory. I asked for hot water, I wanted to take a shower, they told me go, the nurse looked after the baby while I was in the shower.” The participants’ opinion about the postnatal care services The majority of the women expressed satisfaction with the advice given to them by the patronage nurses, with the exception of one who was dissatisfied and one who didn’t have an opinion because she wasn’t visited by the patronage service. The participant who wasn’t visited thinks that the reason for this is because she delivered her baby in Kumanovo. The participants think that the patronage nurses should visit them more than once. Representatives of the health-care services According to the statements of Dr.G.M., a gynecologist, the pregnant women in Kriva Palanka are exposed to a large risk from wounds and belated interventions because the gyne- cological – obstetrical department has no doctor – gynecologist. Neither the leadership of the hospital nor the institutions have sense and interest to solve the problem. Besides, the depart- ment is being renovated for more than 10 months. Because of this, there is no possibility for a stationary care and intervention, the patients are referred for anything to the GYN-OBS de- partment in Kumanovo and the Clinic in Skopje. Such a state provokes further expenses, addi- tionally burdens the patients, which is highly inconvenient for the Romani women. Dr.G.M. selects two groups of the Romani women in Kriva Palanka. The first group is more ed- ucated and aware of the health-care need, however, unfortunately, this group is small, and the second one which lives is very bad socioeconomic conditions. It is exactly this female popula- tion, whose number is approximately 80% of the Roma people, who don’t go to regular control examinations during pregnancy. As a huge problem Dr.G.M. points out the early pregnancy among Romani women, at the age of 15 and their late arrival.
48. 48 Dr.G.M. “They come in very difficult condition, anemia before giving birth. They don’t take medica- ments, they don’t listen to recommendations”. When establishing pregnancy, every patient gets a mother’s cars, her blood type is determined, as well as urine culture, weight, and blood pressure i.e. everything is performed according to the gynecological antenatal protocols. The Romani women who come from the ghetto districts don’t come in for preventive examinations regularly. Dr.G.M. answered the question whether the patients pay for preventive examinations and mother’s cards in this way: “It takes 200 denars to open a mother’s card and then we don’t ask for more money. If there is some forced intervention i.e. an extra package it’s charged 100-150 denars.” Dr.G.M.’s opinion is that due to the conditions at the gynecological – obstetrical department in Kr. Palanka (without a doctor and renovating for already 10 months), the number of births has decreased. Since the beginning of 2011 to the moment of the interview there have been 110 women who delivered babies there. On annual basis, about 30-40 women, belonging to the Roma ethnical community, give births in this health-care institution. “We give births in terrible conditions and there is no institutional frame to cover up for us”. Because there is no doctor on a night shift at the department, the admission is completed by a obstetrics nurse who examines the woman, checks the mother’s card and delivers the baby. According to the data from the mother’s card and the findings during admission, the more dif- ficult cases are sent to Kumanovo or Skopje. There is good communication with the gynecologists from the private health-care institutions who, on call, without any financial compensation (only their good will), come to perform the delivery or to refer the patient to another town, if it’s needed. An obstetrics nurse: “Here the women that are about to give birth are admitted exclusively by an obstetrics nurse in the night shift. During the day there are two doctors, first and second shift, and the women are primarily admitted by them in the gynecological – obstetrical ambulance, then they are referred to us and we admit them. At night we take them in, we inform the doctor, if he/she can, he/she comes, writes a referral”. As the most frequent difficulties after an intervention or birth, the gynecologist and the ob- stetrics nurse state the inflammatory processes that result from not taking antibiotics and in- sufficient hygiene of the genital area. Rarely there can be mastitis, mainly because the women didn’t accept the advice given. Dr.G.M. considers that there is no problem during communication with the Romani women, he can understand them, and in the cases of very young women, they usually come accompa- nied with an older person. Unlike him, the obstetrics nurse at the gynecological – obstetrical department considers that the women listen more to what they are being told, then to truly understand the words said.
49. 49 “I can say that 95% of the patients listen to us, than to essentially understand us and we try as hard as we can to influence on them and to explain them about the complications after delivery, how they are supposed to maintain personal hygiene because it is on a very low level”. In question of communication, the patronage nurse also considers that there are no problems even though the first contact with a Romani family is usually with a dose of reserve and distrust. This service most often advises pregnant women to pay attention on appropriate hygiene, high blood pressure control, medicaments use or refers them to go and see a gynecologist. Accord- ing to the experience of the patronage nurse, the health problems that the Romani women who are pregnant or breastfeeding face are the psychological disorders, which take place in marriages between minors in families where more generations live in one community. The obstetrics nurse, the nurse and the doctor all conclude that education for the Romani woman is the basis for everything and it should start in the pre-school period when from an early age these children will be socialized and included in the educational process. The health education of adults must not be neglected, too. A gynecologist:“It shouldn’t be Roma people Decade, but a continuous process. We are here and we should organize and hold lectures. The birth age limit will move, we will raise awareness about a safe sexual relationship and contraception use. We should fight for the generation that is born and raised right now”. The interviewed health-care representatives from Kr. Palanka pointed out the need for the employment of the Roma people as a basic precondition for a life with better quality. The pa- tronage nurse considers that there should be prenatal preparation started and also there should be an active Counseling for pregnant women. The doctor and the obstetrics nurse think that there should be continuous personnel provided for the gynecological – obstetrical de- partment.
51. 51 Focus groups Kochani
53. 53 Access to health-care services in the period of pregnancy and attitude of the health-care personnel towards Romani women – prenatal protection All the participants from the focus groups were directed to share their experiences about the manner and quality of services they got when they went to give birth at the hospital. Twenty-four of the participants in the research in Kochani said they have a chosen gynecologist. All the women stated their satisfaction about the attitude of the chosen gynecologist towards them who, according to their claims, besides being a good doctor, is very understanding about the economic difficulties they face in their everyday life. This was emphasized by the women because she waited the Romani women to pay for the services she provided and so they felt her as a close person. Four Romani women said that their chosen gynecologist visited them during labor time. “She visited me while I was giving birth”. Almost all of the women from the focus groups said that their chosen gynecologist is a woman. It’s easy to notice that the majority of the women during their second or third pregnancy went to see their gynecologist more regularly than they did during their first pregnancy. The women shared the experience that the information which they got from the doctors, if they don’t go to regular antenatal examinations they won’t be admitted to hospital or won’t get funds for a third child, served as a motivation for more regular examinations. Out of a total of twenty-four participants, nine women went only once to a control examination during pregnancy in order to get a mother’s card or just before delivery. As a reason for the ir- regular control examinations at their chosen gynecologist, the participants called upon their bad material situation. “I didn’t go regularly because I didn’t have money, you are supposed to pay for the ultrasound examination, for the blood analysis test, it all takes money”. “I know that I should go to an ultrasound examination every month, but how can I afford it when I don’t have the money, how…?” “They say that if you don’t go regularly, they won’t look after you, but every month 200 denars, ultrasound 150, blood analysis 50 and mother’s card 50”. All of the participants had mother’s cards during pregnancy, with the exception of one woman who didn’t have the document due to unknown reasons. They paid for it from 50 to 100 denars. Only nine participants did blood analysis tests from two to four times during pregnancy, a gy- necological examination in the beginning of the pregnancy and later ultrasound examinations and blood pressure controls. For all gynecological examinations the women shared experiences that they paid financial par- ticipation. We have to note that the number of miscarriages with the participants from this town is significant. One cannot just ignore the fact that seven Romani women lost their fetus in the period from the second to the fifth month of pregnancy.
54. 54 Experience in the hospital and services received during labor One thing which can be pointed out among these women is that some of them had the experience of twin pregnancy and one of them lost them during pregnancy. Most of these women have never been employed. As a problem for the women from Kochani also poses the fact that the more complicated cases are sent to give birth in Shtip or Skopje. Especially the women with twin pregnancies aren’t accepted for delivery at the gynecological – obstetrical department in Kochani, as a reason for this a gynecologist obstetrician from this hospital states that the hospital doesn’t have appro- priate neonatal services. “First I went at the gynecological – obstetrical department in Kochani, they told me: ‘You are not ready for labor yet. You will stay here for three days to see whether you’ll have contractions’, at 2 o’clock I started bleeding and I was immediately sent to Skopje. Here twins are born rarely. They didn’t say anything special. ‘You aren’t dilated yet, go to Skopje’. With a nurse in a hospital ambu- lance, no doctor to escort me, they didn’t want to come, only the nurse accepted”. “They didn’t admit me with twins here in Kochani, I was sent to Shtip. Because I wasn’t admitted in Shtip, I went to Skopje with a taxi, I don’t know why but when they hear twins they send you to Skopje right away, they were afraid for the babies. With contractions, without ambulance, luckily, I went through a spontaneous labor…The doctor from Skopje was in wonder why I wasn’t ad- mitted in Kochani”. From the twenty-four women who participated in the focus groups, only two had their last deliveries in Skopje, the rest of them gave birth in the local hospital in Kochani. Seven participants said that they weren’t satisfied with the treatment from the doctor who at- tended the childbirth in the hospital. Eight shared the experience that they were satisfied, while nine participants didn’t have a specific opinion, but instead just gave comments. “The doctor was fine”. “The doctor yells after the woman if she is not clean, many times there were Macedonian women, other women, too, they come dirty, the doctor criticizes them, embarrasses them,…They yell a lot if the woman is kicking, if the women are screaming he is yelling at them as well”. “With your first child you don’t know what to do, you loosen your leg and he tells you ‘put it up’, they were talking to me, but I didn’t understand them anything, now with the second and the third I know what it is like and now there are no problems and the doctor doesn’t yell at me”. “Dr.X. was delivering my baby, I did well, he was kind, didn’t yell at me, he was really fine, when you have contractions you are alone, when you can’t handle the pain anymore they bring you in, they don’t let anyone stay with you”. The participants share the experience of not understanding the doctors during the first child- birth. “They told me ‘go onto the maternal stalls’, I was wondering ‘what stalls?’, they showed me ‘there’, when I saw it, I was surprised, wondering that I will have my baby there. ‘Climb up on your own’, that’s what the doctor said. The doctor said ‘come on, on the stalls’…I wasn’t familiar with the word”.
55. 55 When asked how satisfied they were with the attitude of the nurses, thirteen women said they were satisfied, and eleven didn’t have a concrete opinion. “I had a stomachache, I had contractions, they didn’t have injections, I asked for a pill, they said ‘this is not a pharmacy, order to bring you from home’”. “She was saying things that you can’t put up with every single minute”. “I was in pain for two hours, they didn’t want to give me, you pay even for the sewing up after birth”. On the question “Did you pay for sewing up?” “Yes, when I was released, 700 denars for 2 stitches, I paid for it”. On the question did they pay for the therapy they received after delivery? All the participants said that they paid for therapy after childbirth; also they say that they paid for the surgical suture they were sewed up with after labor. “I told him that I should be given two dosages of plasma, he said I need to pay for that, 50 Euros one dosage, he said ‘you have 77 blood, you can’t give birth in such a state, maybe if you have a blood donor from your family’. In the end we didn’t pay because my father-in-law was a blood donor”. Opinion about the hygienic conditions in the health-care institutions – gynecological departments General conclusion of all the participants was that the hygienic conditions don’t fit the prescribed standards, the food has bad quality and taste and because of this they didn’t con- sume it. The conditions for maintaining personal hygiene in the hospital are satisfactory from the aspect of access to hot water for bathing, but they are not satisfactory from the aspect of orderliness and hygiene of the room. All the participants think that the hygiene is more satisfactory among the newborns. Opinion of the participants about the services from postnatal care On the question how satisfied they are with the experience with the patronage service, twenty-one women answered that they were visited from the aforementioned and they had much use from the advice. Three participants answered they weren’t visited from the patron- age service and so they have no opinion about their services. The participants recommended to the institutions in charge to provide conditions for employ- ment, to decrease the participation for medicaments and health-care services and to abolish the administrative taxes when applying for documents. The women also recommended pro- viding all the conditions for normal childbirth in the hospital in Kochani.
56. 56 The representatives of the health-care services At the gynecological department in Kochani there are about 2-3 patients who give birth on a daily basis, on annual basis in 2010, according to the gynecologist I.A., there were 531 patients who went through labor at this department, 90 of them were Romani women. The doctor says that when a patient is admitted for childbirth, the admission is implemented based on prescribed standards and procedures. The examination of the patient is performed by a specialist in gynecology and obstetrics, during which it is confirmed whether the patient is going to deliver the baby in Kochani or she will be referred to the Gynecology and obstetrics clinic (GOC) in Skopje. Dr.I.A. considers that there are flaws in keeping the mother’s cards dur- ing pregnancy and irregular conducting of prenatal preparation. On the question which health problems are noticed with Romani mothers during birth, dr.I.A. pointed that delivery and postnatal problems can occur in all patients of any nationality. As the most frequent problem during labor, the doctor mentions the weak contractions. The patronage nurses who are in permanent contact with the Romani women in their homes say that there is mutual understanding and they feel very well accepted when they visit these women. They define their role as a patronage nurse as advisory. They advise the pregnant women to visit the gynecologist and to perform the necessary antenatal examinations, they advise them about the food regime, family planning and newborn care. The only direct service they can perform on the field is to measure the blood pressure. The patronage nurse considers that the reason because the women don’t go regularly to ex- aminations at their GP is that they pay for the examinations. “However, we come across a problem here because when they go to a gynecologist they have to pay for the examinations on the pregnant women. According to the law, three of the examinations while the women are pregnant are supposed to be free of charge, but that is not respected in practice. Due to this, there are cases when women call us, as patronage nurses, to tell us they are pregnant, but they don’t go to the doctor or they just call once and then directly go to give birth”. “Pregnant women don’t go to examinations exactly because they have to pay for the ultrasound 150 to 200 denars. Concerning this, we tried to contact the Fund, they told us to write a request and that the patients should ask for their rights themselves. The women respond to that ‘and then, when we go to the gynecologist, after that who will look after us’. The Romani woman besides not knowing her rights is also afraid to use them”. The obstetrics nurse who works in the patronage service, as well as the nurse, consider the economical problem as a main and leading problem due to which the women don’t go to control examinations during pregnancy. “The biggest problem is the economical one, they can’t register and get their documents because they don’t have the means. In this sense they lag behind, because they don’t have documents and then they don’t call in regularly for examinations, but only in order to get help to get to their doc- uments. And, of course, education to have knowledge about how the institutions can help them, that the general practitioner is free, that the ultrasound examination is free three times during pregnancy, that they shouldn’t pay for their examinations at their chosen gynecologist”.
57. 57 Personal impression of the patronage nurse is that there is a bigger number of educated Ro- mani women and that they already start planning their own families, don ‘t have many births and a family of more members. As some of the problems that women face during pregnancy, the patronage nurse points out anemia and higher blood pressure which remain even after delivery. In the postnatal period there is a frequent occurrence of mastitis, but with the help of their advice about proper breast- feeding, breast care and milking, the problem is solved. “Even after birth there is usually the same problem, there is still anemia, because we know that during labor the woman loses blood. Besides anemia, many of them don’t have the means to buy the basic medicaments, and it’s even more difficult to afford something else. We can’t help them financially, only with advice. And with advice… you advise them, for example, about food, and the people don’t have money to buy bread”. In the period after birth, as a problem also pose the postnatal crises of the mother. The advice from the patronage service personnel are of great help. “Usually the women fall into crisis that we call postnatal depression, the woman needs support from the family. We usually have calls like ‘come to talk’, so that she can relax and talk, because she discovers this trust in us accomplished over time”. Because some of the women give birth in other towns, the patronage service faces the problem with newborns’ registration, especially the ones born in Skopje. They don’t get lists from there, but they try to solve this problem in cooperation with the vaccination service.
59. 59 Focus groups Bitola
61. 61 Access to health-care services in the period of pregnancy and attitude of the health-care personnel towards Romani women – prenatal protection The questions we asked in this part of the discussion with the women covered the opinions and experiences of the participants about the services and quality from the prenatal care. Out of a total of 25 participants in both focus groups, eighteen Romani women have a chosen gynecologist. From the women who don’t have a chosen gynecologist, two said that they delivered their babies six years ago when the concept of a chosen gynecologist didn’t exist; one said that she didn’t need a doctor so far and for three women the main reason was the financial means. Three participants didn’t have mother’s cards, as reasons they listed: the doctor didn’t give them the card although they went to examinations, they didn’t go to antenatal examinations but directly to the hospital to give birth. The majority of the participants went to regular examinations during pregnancy except two Romani women who, without a specific reason, didn’t go to examinations regularly, only in the beginning of the pregnancy and before labor. ,“I wasn’t interested, I wasn’t thinking about getting examined, only to see when I will give birth”. “I went in the sixth month and that was it, I don’t go, I don’t think about it, you run, work all day long, you don’t think about it, we are not interested”. During control examinations, the doctors most often did ultrasound (echo) examinations, blood analysis tests, urine culture and measured their blood pressure. Five participants said that during pregnancy they had anemia confirmed. The women participants in the research shared experiences that for the antenatal examina- tions some of them paid 300 denars every month for each examination, while at another doctor some of the women paid only once. “Dr.X. is my chosen gynecologist, he is very good, we pay every month, 300 denars”. “If he is your chosen gynecologist, you should pay only once, not every month”. “The doctor takes 300 denars and that’s it”. They are satisfied with the attitude of their chosen gynecologist with the exception of six Ro- mani women who think they are discriminated since they were passed over in a line. “The good thing is, let’s say, you want to get in quickly and hear what she has to tell you and then the other one comes in, but if there is a richer woman, she goes in first and then us”. Several participants who have the same chosen gynecologist consider his attitude when com- municating with them humiliating and they notice he doesn’t behave the same towards them as he does towards the women who are not Romani. “He explains, but somehow in a jokester kind of way”.
62. 62 Three participants lost their fetus in the pregnancy period until the fifth month, one Romani woman had an abortion in the seventh month of pregnancy due to an established invalidity of the fetus. These women weren’t explained the reason for the fetuses’ death, not even the par- ticipant who had miscarriages four times. Usually they were given therapy. “They didn’t explain anything, I couldn’t have a baby, since I got pregnant with this one I didn’t go to the doctor and managed to go through the whole pregnancy, they used to give me pills, vaginal suppositories, injections, everything, but the same was happening over and over again, they didn’t tell me why and I still don’t know”. When asked whether some of the participants had a child at the age of up to one year deceased, only one participant answered that her child died in his sleep, when he was eight months old. She shared the experience that she didn’t allow autopsy but also that she didn’t understand the doctor’s explanation about the reason for the death. Experience in the hospital and services received during labor One thing which is specific about this town is that all of the women who participated in the focus group are unemployed and illiterate. Also, it is an interesting fact that the citizens belonging to the Roma ethnicity from this town don’t speak the Roma language, but the Mace- donian, and yet the barrier between them and the majority population group is deep. In this town women still experience childbirth in home conditions. Among the participants we iden- tified five women who gave birth early due to difficult physical work and experienced stress. The participants, when asked whether they were immediately admitted by the medical per- sonnel at the gynecological – obstetrical department in Bitola, shared different answers. Thir- teen women said they were admitted right after arrival and were satisfied, seven women had a negative experience during admission and five gave comments about the treatment like: “They admit us, but don’t pay attention to us”. “I put up with the contractions at home”. “I gave birth to two of my children at home, two in the hospital”. “I went there with my health-care card, I had contractions, they told me – ‘wait there for half an hour’, I was in great pain, with my husband in the corridor, my water broke, I wait, my husband calls them – my wife is in strong pain, the doctor should come…my wife should die, Roma people have no respect wherever we go”. The participants shared different experiences when asked about the attitude of the medical personnel in the hospital. From 25 participants, seventeen didn’t have good experience with the doctors during labor, most of the women had to put up with the contractions for a longer time and they weren’t even asked by the doctor about how they felt. It’s important to point out that in these focus groups two of the participants left the hospital one day after childbirth. The reason for such a decision is that they didn’t have the financial means to stay in the hospital.
63. 63 “I took my baby, I have nothing to eat, they asked for tarpaulin, I took my baby, wrapped him my nightgown and went home, one day after birth, no one looks at you, if you are well or not, I signed to get out…I didn’t even take him to vaccination”. “’If you don’t have money, how do you come here?...You know you have to pay…’ (the nurses told me), and we don’t even have social security, no one works, where can we find the money”. “Somewhere they are kind, somewhere not, some of them are fine, some mean”. “I was in labor from the morning to the evening, I had strong contractions”. “Once during the doctors’ visit, they don’t pay attention, they don’t mind anyone, I have to ask for everything, if I ask for something, isn’t the doctor supposed to ask you if you are in pain, how are you, I have to go there personally to tell them that I am in pain and if you go he will tell you non- sense, I tell him ‘why do you bother me, is it because I am a Romani woman?’”. “…I was left alone, the baby was in pelvic presentation. For two days they left me there screaming, no doctor to take me to surgery, to perform a C-section. And it was nice for you back then, they told me. I say – you don’t know what childbirth feels like. They said – be quiet you Gypsy woman. Save your soul, I would say. Both doctors and nurses, everyone mocked me. The nurses are even worse”. Some of the participants shared the experience of a very painful gynecological examination. “Once it happened, with the fourth child I didn’t go to control examinations and I was bleeding all the time, I had great pain in the area of the kidneys, stomach, I didn’t take anything for the pains, he (refers to the doctor) examined me with four fingers penetrating, luckily the obstetrics nurse came and said ‘what are you doing to the woman, do you want to make her die?’, he left, she examined me and determined my due date”. When asked about the opinion and experience about the services given from the medical nurses, the women answered that some of them were kind, some not. Fourteen participants answered that they are worse than the doctors, nine answered that they had a good experience with the nurses and two only gave comments about the nurses’ behavior. “Differently, there are good ones, there are bad ones”. “Some of them said to my parents when they visited – come on, go away. They just came in, I say to her, let them see the baby, but she says let’s go, there are viruses. When Christian people came, it was different, stay for a while, then go. She was doing that on purpose, why didn’t she tell them come on, let’s go. Another nurse says stay for a while, then get out, the doctor will get angry. Some of them explain, some don’t”. “Depend who is on shift, they know the others bring them gifts, but they don’t get anything from us. They even bring them bouquets”. “I didn’t have any problems with the nurses”. M:”Why, would you give them something?” Partici- pant:”I didn’t give them anything, they were kind, they treated me as good as the others, and was the only Romani woman in the room, the others were Christian women”. When asked how satisfied they were with the way the obstetrics nurses took care of the babies, the women answered that the care wasn’t always appropriate. Some of them complained that there were cases when the babies were bathed with cold water and then they would catch a cold.
64. 64 All the participants answered that they didn’t have the experience of being accommodated in segregated rooms or giving birth in segregated maternal stalls. When asked whether they had to pay for therapy during their stay in the hospital, all the par- ticipants said that they paid for their therapy in the hospital. Opinion about the hygienic conditions in the health-care institutions – gynecological departments General conclusion is that the hygienic conditions didn’t fit the prescribed standards, the women had to bring their own tarpaulin, which was a precondition for changing the sheets. The food was with bad quality and taste and because of this, they didn’t consume it. The con- ditions for maintaining personal hygiene in the hospital, according to the participants in the focus groups, were also unsatisfactory for all of the participants and, most often, one of the biggest problems was the lack of hot water for bathing. “I was waiting until they fell asleep, then I would turn the water heater, I would keep some hot water for me and bathe”. “There was water for two of us, for the other two there wasn’t. I go there, no water, the janitor gives the key to the Macedonian woman so that she can take a bath and I can’t, as if the Romani women are of lower class”. “When I gave birth to my son, in the evening they told me there is hot water, for the babies in the morning, one of the Macedonian women went in front of me, I go and she tells me ‘it’s okay, there is water, it’s locked, ask for the key’, I go to ask for it, she says ‘what key?’, …to go inside, I want to take a bath, too, ‘no water’, she says, ‘you’ll have to wait for 2-3 hours’. So, she doesn’t want to help me, they always bother us, the Romani women”. Opinion of the participants about the services from postnatal care Some questions were asked about the services from the neonatal care, just to see how many of the women were visited and whether the advice from the patronage nurses was useful. More of the participants shared the experience that they were satisfied from the advice of the patronage nurses and that they were visited, whereas five women weren’t visited. The participants who weren’t visited from the patronage nurses assume that the visit was not accomplished due to the distance of their place of residence. “She tells you about the baby if it is breastfed properly, does it put on weight, how to hold it, does it perform its physiological needs properly, how to clean its navel”. “My baby had jaundice when I came from the hospital, it started on the third day, afterwards they controlled it all the time and it was good, they helped a lot”. In the end, the participants sent a message that they live in poverty, the procedures for acquir- ing health-care protection and requests for social security are very complex and expensive for them. The administrative taxes when requesting personal documentation are expensive for the Romani women. In the end, the mothers stated this:
65. 65 “It’s wonderful being a mother”. “Yes, but we have to think about life, too” “It’s very difficult, very hard when one doesn’t have conditions, when there is no water”. Representatives of the health-care services The obstetrics nurse from the gynecological – obstetrical department in Bitola. A pa- tient who is about to give birth mustn’t be returned, so all patients are admitted. You mustn’t turn down a patient seeking for help. According to the data from the gynecological – obstetrical department in Bitola, out of total 1400 births on annual basis, 10-12% are births by Romani women. “From January 19 to September 19, at our department there were 56 Romani women, 18 of them had their first child, 17 their second and 11 gave birth for the third time. By the way, from total number of 1400 births on annual basis, 10-12% are births by Romani women”. The services available for the patients are: admission, examination, preparation for childbirth, anamnesis, gynecological examination, ultrasound, sanitary examination, CTG to measure the contractions (urine culture, thermo measure, enema). The women are admitted by and have their first contact with the medical nurse. When the patient is hospitalized, there are: a doctor specialist obstetrician and an obstetrics nurse, whereas during labor there is a complete medical team present: a doctor gynecologist obstetrician, medical nurse, anesthesiologist (if needed) and an obstetrics nurse. When it comes to communication during birth, both the obstetrics nurse and the doctor said that they have always had good cooperation with the Romani women while they were in labor. The Romani women are also much better for cooperation with the doctor, they follow orders and don’t resist. The younger ones are emancipated and educated. However, there are still some Romani women who give birth at a young age. They are very durable and positive during delivery. “There is no language barrier, the women here in Bitola speak Macedonian”. With Romani women, most of the births are normal. The gynecologist and the obstetrics nurse consider that 80% of the pregnant women go to control examinations, but not according to the prescribed protocols that every woman should follow during pregnancy. One problem with the Romani women is that due to financial prob- lems they don’t go to examinations, don’t have regular control examinations during pregnancy and have no information. According to the doctor’s opinion there should be a regulation for each woman before giving birth to make a test for HIV and AIDS, hepatitis B and C, because the medical personnel is ex- posed at risk. The Romani women give birth with the other women. The patronage service within its working assignments performs blood pressure control and checks the regular monthly examinations. We recommend the women to eat healthy, to main- tain hygiene for themselves and for their families and to regularly go for examinations at their chosen gynecologist. At the same time, we encourage the women to exercise their rights and, most of all, to take care of their own health.
66. 66 There are eight patronage nurses who work on field and cover the municipality of Bitola and the surrounding villages of the municipalities Mogila and Novaci. Each patronage nurse should visit six patients daily. According to the statements of the patronage nurse, during 2010 every Romani woman who gave birth was visited, except those who didn’t give an exact address. From the fieldwork experience and from the work with the Roma population, the health prob- lems they notice among the Romani women are malnutrition, anemia, frequent colds accom- panied with complications, they don’t look after their reproductive health. Most of the Romani women aren’t aware about the health problems they have, because they don’t go to the chosen gynecologist regularly, they don’t do systematic examinations. Before birth, they face anemia, have urinary infections, vaginal infections, low blood pressure, and often these progress after birth because they don’t take therapy due to financial problems. The patronage nurse considers that there should be more attention paid on the use of contra- ception, not only to stop pregnancy but also to protect from sexually transmitted diseases and for better care about their own health. The Counseling for reproductive health in Bitola works very actively. The biggest attendance comes from users at the age from 12 to 27/28 years. The monthly attendance of the Counseling is 40-45 visits but, when it comes to the Roma population, so far it was visited by only one Roma person. The basic aim of the function of the Counseling is to educate and raise awareness among the adolescent population about the functioning of the human organism. How the reproductive organs work, the role of the hormones, signs of puberty and the changes that happen in this period of the adolescents’ lives. “We tell them which diseases and problems they can come across. We tell them about sexually transmitted diseases, how to protect themselves. We give out free condoms, we have free oral con- traceptives and aids for presentations, lectures and anything that could interest them”. The Counseling does fieldwork through regularly giving lectures in all educational institutions starting from primary to higher education. “When it comes to Roma people, I believe that the Counseling is open for all citizens of the munic- ipality of Bitola, no matter of their nationality (Roma people, Macedonians, Albanians, Turks)”.
69. 69 Interviews with representatives of institutions
71. 71 Aiming to examine the practical implementation of the laws, the existing mechanisms and services that the users should receive and are under institutional jurisdiction, in this re- search it was planned to realize interviews with the representatives of the Ministry of Health of the R. Macedonia, Public Health Institute of the R. Macedonia, representatives of the gyne- cological – obstetrical departments, Counselings for reproductive health, Ministry of Interior, Health Insurance Fund of the Republic of Macedonia and the Office for Management of Regis- ters of Births, Marriages and Deaths at the Ministry of Justice of the R. Macedonia. The issues intended for the institutions cover the problem of the Romani woman, who faces multistage discrimination on all social levels. They are designed to examine the function and the existing mechanisms, as well as the services that the Romani woman gets during the re- productive period, and that are in accordance with the Health-care Law. The data from the in- terviews are a basis for comparison about how much the health-care services from the reproductive period are available for the Romani women. How and which barriers there are that women most often face with, and which are a condition for unavailability of the health- care services for the Romani women. Out of the planned maximum 30 interviews, we managed to realize 25 with the following rep- resentatives of institutions and health-care institutions: Public Health Institute – Skopje, Office for Management of Registers of Births, Marriages and Deaths – Skopje, gynecologists – obstetricians in Kumanovo, Shtip, Kr. Palanka, Kochani and Bitola, obstetrics nurses, patronage nurses and representatives from the Counselings for re- productive health in Kumanovo and Bitola.
72. 72 HEALTH INSURANCE FUND „The insured persons do not pay for the childbirth services.“ Are you familiar with the health condition of the Romani women (Roma people) in the R. Macedonia? The Health Insurance Fund, as a buyer of the health-care services, equally provides them for all insured people on the territory of the R. Macedonia, regardless of the nationality that these persons belong to. What are the current policies of the Health Insurance Fund for improvement and preven- tion of the health of Roma people i.e. Romani women? The prevention of the health of the insured people is one of our priorities which is being ac- complished continuously in the sense of permanent enhancement and improvement of the health of all insured persons, aiming to provide timely detection of many disorders through preventive measures and activities, planned at the general practitioners’ offices as well as at the Health-care offices throughout our country. What is the statistics about the number of insured Roma people on a national level? All of the insured people are equal for the Fund, without discrimination. According to the legal regulations, the Fund has data about the total number of insured persons, total for regions, too, and according to sex and age structure. In 2011, the total number of insured people in the Republic of Macedonia was 1898548 and 898293 are female population older than 11 years of age. These are presented in the Fund’s annual report which was published on our website. Introduce briefly the Fund’s authorizations and its connection with the remaining health- care institutions. The Health Insurance Fund was founded according to the Health-care Law as an independent financial institution with its rights and regulations for implementation of the mandatory health insurance on the territory of the Republic of Macedonia. The Fund performs activities of public interest and conducts public authorizations established by the Health-care Law. With the Health-care Law, the Fund was given the rights, obligations and responsibilities to plan and collect the funds from the mandatory health-care insurance contributions, to deter- mine the manner of implementing the rights and obligations of the insured people with general acts, to pay for the health-care services and financial compensations, to act for effective, efficient and economical use of the funds, as well as other rights and obligations from the mandatory health insurance. Depending on the needs for the health-care services of the insured people on the territory of R.M., and within the determined budget funds, the Fund buys health-care services, for which he makes contracts with the health-care institutions.
73. 73 In the interest of the insured persons, in order to provide them more available and better-quality health-care services, the Fund is a buyer of the health-care services according to the levels of health protection, activities and special activities. How many insured Roma people do you have? All insured people are equal for the Fund, without discrimination. What type of insured people do Roma people/Romani women fall into? The insured people are expressed by types of insurance, without discrimination: worker – employed. citizen of R.M., employee of a foreign and international authorities, organizations and institutions on the territory of R.M., self-employed person, individual farmer, religious official, member of religious orders, except members of monasticism and sisterhoods, temporary unemployed person receiving financial compensation for insurance in case of unemployment and unemployed person actively searching for a job, unless there is another basis for insurance, citizen of the Republic of Macedonia, employed abroad, if during that time he is not compulsorily insured by a foreign insurance carrier according to the Law of the country where he works, or according to an international agreement, and whose address was on the territory of R.M. before establishing his working rela- tion abroad – for the family members who live in the Republic of Macedonia, beneficiary of pension and salary compensation according to the regulations of the pension and disability insurance, citizen of the Republic of Macedonia receiving pension or disability compensation from a foreign insurance carrier while staying on the territory of the Republic, person user of permanent financial compensation, person situated in a foster family and in social-care institution, user of financial compensation for help, care and compensation of a person who as a minor had the status of a child without parents and parental care, according to the regulations of social protection, if he cannot provide insurance on other basis, prisoners serving a sentence, people in custody (if not insured on other basis) and minors serving measures in a Correctional facility i.e. institution, citizens who are not included in the compulsory health insurance can access the compulsory health insurance in order to exercise their right to health-care serv- ices from the basic package of health-care services, according to the law etc. What is the value of the capitation point per patient for a chosen gynecologist? The value of one capitation point per patient at the chosen gynecologist is 50 denars.
74. 74 Do the chosen gynecologists inform them to do free gynecological examinations on annual basis? The chosen doctors are bound to inform regularly about the performed measures and activities as preventive health-care services and activities. If they do, how do the chosen gynecologists inform about the realized free examinations? Through monthly, quartile and annual reports, through an information system connected with the Fund. How much does one gynecological examination cost at a chosen gynecologist? The insured persons don’t pay financial participation for using the services at their chosen doctors – gynecologists covered with the compulsory health insurance, the examination is free. How much does childbirth in a state health-care institution cost? Childbirth in Macedonia is covered with the Health-care Protection Program, established by the Ministry of Health and there is no financial participation charged for these health-care services, which means that childbirths, in institutions that the Fund has contracts with, are free. Which services are free for the patient when she gives birth? Every insured person from the female population is free of financial participation when they give birth. Which services do the patients need to pay for when they give birth? For the services about childbirth, the insured persons do not pay. Which measures can the Health Insurance Fund take for patients using social support, which cannot pay for medicaments and services during their stay in the hospital? Social support users are insured in the Fund and exercise the rights of the basic health-care packages, just like the other insured persons. For medicaments issued on receipt, they pay fi- nancial participation. According to the law, the following are free of financial participation: insured persons for medical examination at their chosen doctor and urgent medical help on call, children with special needs, according to the social protection regulations, users of permanent financial help, people accommodated in social protection institutions and in another family, according to the social protection regulations, except medicaments issued on receipt from the primary health-care protection and treatment abroad, mentally ill people accommodated in psychiatric hospitals and mentally retarded people without parental care, insured persons that during one calendar year paid participation in the specialist – con- sultative and hospital health-care protection, except medicaments on receipt in the pri- mary health-care protection and treatment abroad, with the expense higher than 70% of the average salary in the Republic in the previous year. For the insured persons who earn monthly income in the family less than the average salary in the Republic for the previous year, and they paid a certain amount of financial participation, in determined percents by
75. 75 Decision they are freed from further payment except for medicaments in the primary health- care protection and treatment abroad. Financial participation-free are children up to the age of 18 and insured persons who need prosthesis for the upper and lower limbs, hearing aids, ortho-optical aids and wheelchairs and from the medical aids for the functioning of the physiological discharge. Can the HIF announce new policies in relation to the financing of the health-care services there will be in the future? The new policies of the HIFM in relation to the financing of the health-care services are directed towards the strategic buying of health-care services.
76. 76 MATERNAL AND CHILDREN’S HEALTH BUREAU “The doctors should strengthen their cultural competencies, because we live in a country where there are numerous various cultures. And if we don’t respect among ourselves, if the doctors don’t respect all patients appropriately, there is a great chance of providing services with insufficient quality. The service may be given, but may not be of enough good quality towards all the citi- zens”. As one of the authorities of the Ministry of Health which takes care exactly about protecting mothers and children is the “Maternal and Children’s Health Bureau”. The Head of the Bureau, Dr. Brankica Mladenovikj, M.S. in public health, M.D., shared her own view about the health-care policies, the current situation, challenges and inequalities the Romani women face. What is the role of the Maternal and Children’s Health Bureau? Dr.B.M.:The Maternal and Children’s Health Bureau is a public health-care institution which performs part of the essential public-health functions, however, it is in relation to only two population groups, women and children (newborns, toddlers and adolescents). What exactly does that mean? Dr.B.M.:We monitor and analyze the health status of women, children and adolescents. We analyze the health indicators connected with these three population groups. Based on these analyses, we prepare recommendations and conceptualize public-health interventions to im- prove their health status. Besides this function, we strengthen the capacities of the medical personnel that work with women and children on a primary level and the doctors from the preventive health-care pro- tection. The function of the Bureau is basically: Dr.B.M.:Preparing health-promotional materials about the population, brochures i.e. educa- tional materials for the doctors who would help in their everyday work: brochures about patronage nurses, brochures about preventive doctors, brochures about chosen doctors etc. At the same time, because we are part of the Health-care Office in Skopje, we work and have partial authorities for the city of Skopje, mainly in the areas of immunization, planning, pro- curement of vaccines etc. Who is the target group of your institution? Dr.B.M.:We work on the similar principle as the Public Health Institute, however, we work with women and children – the two most vulnerable population groups. women in the reproductive period at different age and also newborns, toddlers to 5 years of age and adolescents to 19 years of age.
77. 77 How does the Maternal and Children’s Health Bureau contribute in creating the public policies? Dr.B.M.:The Ministry of Health, quite often, involves the employees of this institution in various work groups for creating national policies, national documents etc. I was part of the work group which created “Strategy for sexual and reproductive health”, “Strat- egy for safe motherhood”, the Public Health Law, I am a member of the National Committee for safe motherhood, National Committee for immunization and a large number of work groups formed by the Ministry. Are you familiar with the health-care policies on a national level intended for Romani women? Dr.B.M.: According to what I know, the health policies on a national level which are focused exactly on the health improvement of the Romani woman are: National action plans prepared because of the Decade of the Roma people; In other national documents the Romani women perhaps aren’t differentiated as a separate group, but placed in the group of the vulnerable part of the population; In the part of the “Strategy for safe motherhood” they are mentioned as vulnerable population groups; In the “Strategy for sexual and reproductive health” the Romani women aren’t differentiated as a separate ethnical group. I believe that we did that maybe on purpose because we didn’t want it to be, in a way, labeling of the Romani woman, since not all Romani women face the same problems. So, it’s possible that some of the Romani women in the group can feel offended in this way. Which services are available for your users? Dr.B.M.: Our institution doesn’t work directly with patients, we get to the population indirectly through preparing different promotional and educational materials on topics from the area of sexual and reproductive health: contraception, sexually transmitted infections in adolescents and women, educational materials for breastfeeding promotion, brochures for safe behavior, healthy nutrition and physical activity etc. In order to get to our target group with regular and timely information, for which the doctors in their everyday work don’t have the time. We act preventively to promote health – prevent the problems by holding tribunes, workshops during which we come in direct contact with the population, we write articles in newspapers etc. In such a way, we contact the patients, giving them the needed information, because informa- tion, if it is true and given in the right time, can be as important as the health-care service itself. Especially due to the fact that the health-care workers, in their practical work, are more focused on the medical approach in their work, diagnosing the disorder.
78. 78 Where do you get the data that you process? Dr.B.M.: From the data that is available to us, which is the data from the Census of the popu- lation, the annual reports of the State Statistics Bureau, from MICS (multi indicator cluster sur- vey) executed by the UNICEF along with the State Statistics Bureau, other researches done by the NGOs, mainly Roma NGOs, and from discussions with the doctors about their everyday work. Since there is no relevant data about the health and health problems of the Romani women. So, we find the data from any possible source. According to your experience, what are the most frequent health problems of the Romani women? Dr.B.M.:The Romani women face probably the same problems as the rest of the female pop- ulation in R.M., and that is a high rate of abortions, low rate of contraception use, there is ab- solutely no data about STD (sexually transmitted diseases) because not all STD are regularly and timely reported in the Public Health Institute. What do these data so far tell about the sexual and reproductive health of the Romani women? Dr.B.M.:We think that the Romani women don’t go to gynecological examinations regularly, they don’t go on time, most often the first examination is not in the first trimester of pregnancy. And it’s extremely important to perform the first examination in the first trimester of preg- nancy. Also, a problem is that a significant number of the Romani women don’t have a chosen gynecologist, so they face barriers for the choice of their gynecologist. The reason for this? Dr.B.M.:Here I’ll already speculate, one of the presuppositions is that they are not financially capable to pay for the health-care services. Then we get to the problem with commercialization of the primary health-care protection, es- pecially about the gynecologists who, after the reforms and the introduction of the capitation method, somehow started commercializing their work without accepting the Romani women as clients whom they can charge for the services. In a way, they avoid to register them as their patients. The majority of the Romani women are not informed that they have the right to free childbirth, they have problems with documentation, therefore they do not exercise this right and give birth at home. Not being informed about the free package of services also contributes for the Romani women to wait until the health problem becomes serious and only then to ask for a health-care service, one cannot ignore the influence of the individual barrier. “Maybe some of them feel that they won’t come across a good reception with the health-care worker so they do not ask for their service on time”. Dr.B.M.:We consider that the regularity in the preventive examinations, PAP tests, mammog- raphy, has improved in comparison with the past. However, the barriers are still the same, they are still of financial nature mostly. When we talk about the reproductive health of the woman, we must not forget the health con- dition of the newborns, children, and even adolescents as well.
79. 79 Problems with the newborns are the small range of immunization although, according to the data from 2010, there is an increase and a somewhat higher rate of newborn babies’ deaths. So, among the Roma population the rate of newborns’ deaths was slightly higher than among the general population. I’ve read in many public media or NGOs reports that the Roma babies’ deaths are twice higher. That is not true, according to the statistical data from 2009 the percent of newborns’ deaths in Roma people is 13,1% on 1000 newborns, whereas in Macedonians 10,6% on 1000 new- borns. We don’t have some relevant data about the morbidity, as most frequent reasons there are res- piratory infections and diarrhea among toddlers. One thing among the adolescent population in Roma people is something that I would not de- fine as a health problem, and that is teenage pregnancy. I do not think this should be observed as a health problem, but as a cultural characteristic of the Roma population. Where the age for getting married is younger than in the rest of the pop- ulation, much more common are marriages before the age of 19 years. Of course that these early marriages are associated with greater risk for the mother’s and baby’s health. It’s like that everywhere in the world. Early age means risk of premature birth, delivering a baby with smaller birth weight which, at the same time, means higher possibility for the death of the baby etc. Can you give a more detailed description about the right to free childbirth, which services are encompassed under this right? Dr.B.M.: According to one of the preventive programs of the Ministry of Health “Program for participation” the woman has the right to free childbirth in the obstetrics department no mat- ter how many days it is going to take, depending on the type of birth. If it is a spontaneous birth and the baby is all right, the period is about 3-5 days as it is for all mothers. If the delivery is performed with a C-section, it asks for 5-7 days, a longer stay in the hospital. However, the baby also has the right to free hospital treatment up to one year. This refers to all citizens in this country, no matter what is their ethnical affiliation or whether they have health-care cards or not. Where does the problem occur? Dr.B.M.: The problem is that the women themselves do not know this right, then the man- agers of the health-care institutions may not know this, may not be informed or avoid imple- menting this because they are afraid that the funds for births should be covered by the institution. So, the funds are transferred to the institution by the Ministry of Health. Maybe the Ministry transfers the funds late, so the managers face loss in the work and therefore avoid giving such services and misinform the women, they tell them ‘we’ll deliver your baby, but you have to pay for it’. Because of this, the woman will leave since she doesn’t have the means to pay or, she will stay and promise to pay and then she will run away. She doesn’t actually run away, she has the right absolutely. On the contrary, the manager should prepare invoice and send it to the M.H. which is supposed to pay for it.
80. 80 Do they have to pay for the given therapy after birth? Dr.B.M.: I am not sure whether this is the right thing to do, so an interesting issue is that even among health-care workers there is insufficient information about the patients’ rights, accord- ing to these programs. I don’t blame the doctors, who are also focused to complete their work, This is something that the managers of the hospital know: the manager, the expertise team and the financial manager, although they may not always know them. We should do something about this, educate them, inform them about what and which services are free, also the population should be educated about which services they have the right to use them according to the state’s policies. If the hospital doesn’t have the funds for medicaments, the patients have to buy them. The question is whether any patient should pay for such a service and whether the M.H. covers these services? The patient shouldn’t be asked to buy anything, the health-care institution should manage its own funds in order to have money for expendables and medicaments and everything the pa- tients could need. However, this is an issue directed to the Fund. What is your message to the institutions? Dr.B.M.: For the institutions that create policies: Ministry of Health, Health Insurance Fund, Public Health Office and the Maternal and Children’s Health Bureau. First, some of the things, which were pointed as problems for some time, are already in process, as for example, that we didn’t have enough data about the health state of certain ethnical groups, so no information according to ethnicity. Now, according to the Law on records, these are already created, but we still haven’t begun using them, as are the new record forms where people will declare their ethnicity. In such a way, we can have a better insight what exactly are the health problems for each ethnicity sep- arately. Due to this, we can devise and prioritize interventions. From what we know so far, what should be done? Dr.B.M.: What is essential to be done, on the level of health-care service providers, which means someone who creates policies, is to strengthen the social competencies of the health- care workers. Is that discrimination? I would call it a lack of cultural competence. Here the doctors don’t recognize completely the problems of the members of different cul- tures. Out of this, discrimination is born, or should we call it inappropriate treatment of the different ethnicities. When we would incent those cultural competencies, when people would understand differences better, they will respect them in different ethnicities. This is something that needs to be done on all levels of primary, secondary and tertiary health- care protection. The doctors should strengthen their cultural competencies because we live in a country with many different cultures. If we don’t respect among ourselves, if the doctors don’t respect their patients, there is a great possibility of providing services with insufficient quality. The service will be given, but may not be of good enough quality for all citizens. The health-care workers should know the policies, the rights of the patients, the programs of the M.H. which exist and, yet, they are not promoted enough.
81. 81 Maybe the MoH doesn’t promote them enough, there should be a way for the health-care workers to learn the essential things they need in their everyday work in relation to the rights of the patients according to the annual preventive programs. These competences should be realized and put in practice on behalf of the M.H. and the net- work of the public health institutions, of course part of these is the Maternal and Children’s Health Bureau. We should make a health-care promotion, in order to provide and strengthen the avail- ability of the health-care services. To decrease the geographical and financial barriers. Even though the service is free, financial participation should be paid, I mentioned that in one section there are still barriers, because of the commercialization that occurred. To respect the instructions about antenatal care, introduced last year, according to which the gynecologists will have to stick to their everyday work. To inform the women what they are supposed to ask from their gynecologist. There are cases where the women go to their chosen gynecologist, they get only ultrasound (echo) examination, without urine culture, microbiological smear or blood analysis tests be- cause it is not refundable for the doctor. The doctors should devise how to respect the antenatal instructions. Of all the strategies we created, the majority is implemented easily, however some of them don’t go smoothly. In these cases, the problem is in the finances, the rebalance of the budget shortens the finances and there is no possibility for us to implement all the things we planned for the current year. Your message to the Romani women and the Roma NGOs? Dr.B.M.: As a public health-care worker, as a human being and as a woman, I believe that the most important thing which will collaborate greatly to enhance the total health condition of the Romani woman and her status is education. The key factor for the health of one person is the degree of education. Since it latter on allows possibilities for employment, economical in- dependence, being pleased with yourself and a life of better quality. A woman who is well educated will know better how to take care of her own health and her children’s health, she will be better informed about the way the health-care system functions and about the services that belong to her as a patient. This is the most important thing. I think that things are improving and I hope that in a short period of time we will enhance the health indicators for the Roma people so that they won’t differ from the rest of the population “The root of bad health is always in poverty. We are aware that the gap between the poor and the rich is getting wider. In the sense that the number of the poor is increasing and the number of the rich is decreasing. So, poverty affects everyone, not only the health of the Roma people, but also the Macedonians and the Albanians and everyone”. We can’t fight this without difficulties. However, the country is making efforts, there were some documents created like “Strategy for decreasing the poverty”, “Strategy for democratic de- velopment” etc. However, I will repeat myself again, the best way to decrease poverty is continuous education. This is where all of us should focus. The health-care sector contributes and it can do a lot but that is not everything. Because 80% of the health of one individual person is in the hands of other sectors, only 20% in the hands of the health-care sector.
82. 82 PUBLIC HEALTH INSTITUTE OF THE REPUBLIC OF MACEDONIA “The programs of the OSF about the health-care mediators, mentoring the Roma students, med- ical scholarships are concrete programs about the Roma people” Department for following the adolescent and reproductive health and the health of the other vulnerable groups Prof.Dr.Elena Kjosevskais a specialist in social medicine with organization of the health-care activities; she is also an adjunct professor at the Department for Social Medicine at the Medical Faculty in Skopje. Prof.Dr.Elena Kjosevska works at the Public Health Institute in Skopje and at the moment she is the Head of the Sector for health promotion and monitoring of non-infectious diseases. The basic activity of this sector is to promote health and that can be achieved on basis of analy- sis of the health-care situation and the health needs of the population. Within the sector, there is a unit for monitoring the adolescent and reproductive health and the health of the other vulnerable groups, where the Roma population is included. The inter- view with Prof.Dr.Kjosevska was done in order to examine the function and the role of this unit within the health-care institutions. Are you familiar with the health condition of the Roma people/ Romani women in Macedonia? Prof.Dr.E.Kj.: I can confirm, for the most part. I was a participant in certain projects14 which aimed to establish, analyze and monitor the health condition of the Roma people. Each year, the sector prepares “Report on the health and health-care protection of the popu- lation in the R. Macedonia”, which can be found on the website of the Public Health Institute. This year we are planning too insert a special part – chapter that will refer to the health of the marginalized groups, and we will analyze the health of the Roma people, Romani women and the exercising of their rights from the health-care protection. The health condition of the Romani women has several characteristics, which are: early pregnancies because traditionally they get married early; frequent occurrence of infections – general infections, but also sexually transmitted dis- eases, the reasons for this may be the socioeconomic conditions and the unemployment; A third characteristic about the Romani women is the big number of children. Also very frequent is unwanted pregnancy which is solved by an abortion, this also refers to other women from other nationalities; generally, for the Roma population, they have a lower Body Mass Index – BMI (ratio be- tween the weight and height put on square) i.e. the majority of the Roma population have signs of malnutrition, again from the aspect of poverty and unemployment; 14 In 2010 “The Specialist Association of Social Medicine Doctors with Organization of the Health-care Activity at the Mace- donian Association of Doctors” in collaboration with the NGO ESE conducted a research about the reproductive health and the reproductive rights in the Republic of Macedonia, where the Roma people were also involved. In it, the knowledge, atti- tude and practice of the Roma people was examined in order to protect their rights, how much they know about their rights and where they can exercise them.
83. 83 insufficient rate of immunization of the children and more frequent exposition to infectious diseases; the frequent infections are a result of living in unhygienic conditions where, among other things, water supply and the disposal of the waste are not solved in the districts they live. This doesn’t mean that this is the case with the whole Roma population, but there are areas like that – in Kumanovo, Shtip and Bitola where Roma people live in inappropriate condi- tions. What are the current policies in the area of health care in order to improve the health of the Roma people? Prof.Dr.E.Kj.: Considering the current health-care policies for improving the health of the Roma people and Romani women in general, I could say that these are the strategic documents in which the measures and activities from the area of health care are provided: the strategy and the action plans for implementing the Decade for Roma people involvement 2005 – 2015 in the Republic of Macedonia. The sector was active in preparing the Action plan and the Report about the Realization of the action plan for Roma people in 2009-2011. With the Action plan for implementing the Decade for Roma people, the Ministry of Health and especially our Sector were actively involved and our obligation was to conduct a research about the health of the Roma people, which we did in collaboration with ESE. As one of the assignments we were given to create propaganda material – a brochure about the health of the population “Happy and healthy in Macedonia”, in Macedonian and Albanian, we also translated it in Romani language and now there is a request in procedure for donators who would finance its printing. Our aim is to distribute it to the Roma population, to present them to the proper lifestyles when it comes to nutrition, quit smoking, stress relief, solving conflicts and physical activity. These are the key aspects of a healthy lifestyle presented in the brochure. Part of the Sector’s personnel is involved in the activities of the Program for medical scholar- ships. I was the mentor of 4 Roma students at the Medical Faculty in Skopje in the academic 2010/2011, in this way I help with their medical education. Also, Dr. Vjosa Rechica is involved in the “Program for health-care mediators for Roma people”. The sector, through Dr. Stefanka Pereva, was involved in the preparation of the National Action plan for improving the social position of the Romani women in R.M. 2011-2013. Besides these activities, we take part in different conferences, congresses, manifestations, workshops, all of which are directed towards improving the health in general and specifically the health of the Roma people in our country. Do you have the statistics about the number of health insured Roma people? Prof.Dr.E.Kj.: You can get these data in the Health Insurance Fund . Which activities are performed in the Department for reproductive and adolescent health and the health of the other vulnerable groups? Prof.Dr.E.Kj.: The Department for reproductive and adolescent health and the health of other vulnerable groups – The Sector works according to the “Program for preventive health-care protection” i.e. “Annual program for public health in the Republic of Macedonia” where there are more activities mentioned, but we also work according to the Program “Health for
84. 84 everyone”, “Program for early detection of the malignant neoplasms” and the “Program for active health-care protection of mothers and children”, together with the Maternal and Children’s Health Bureau at the Health-care Office in Skopje. In 2010/2011 I was the coordinator of a working group for the creation of the “National strat- egy for sexual and reproductive health in the R. Macedonia”, approved by the Government of R.M., I was also part of the working group for the creation of the “Framework for general sexual education in R.M.”. At this moment, in collaboration with ESE, we work on the creation of a draft-text of a docu- ment that will be delivered to all governmental structures, in relation to the possibilities for bigger availability of the medicaments for osteoporosis and the female hormone products (contraception), in order to improve the women’s health and again, in this sense, the health of the Romani women, too. We did an economical analysis in which we factually give data about how it is cheaper for the Fund to include one contraceptive in the positive list for medicaments in contrast to the funds it gives for curing the malignant neoplasms, which come as a result of improper sexual behavior. We give examples about the costs of the abortions, hips surgeries that are connected with os- teoporosis etc. So, there are no concrete programs for Romani women, only general programs which en- compass the Romani women as well? Prof.Dr.E.Kj.: The Programs of the OSFM for health-care mediators, mentoring Roma students, medical scholarships are concrete programs for the Roma people. The ESE research was con- cretely about the reproductive health, with a special component for the Romani women. What is your opinion about the strategy for reproductive health since you are a supporter and one of its creators? And also, what do you think, how much can the Romani women gain from it? Prof.Dr.E.Kj.: The strategy is created according to the recommendations of the European strategy for sexual and reproductive health and the World Health Organization. So there is a European strategy for sexual and reproductive health of the WHO and we literally had it as an example, we only adapted it to our conditions in Macedonia. This strategy is valid to 2020 and focuses on several areas, among which are the protection of young peo- ple, regardless of their national and ethnical affiliation, sexual health, the woman in the reproductive period, protection of the woman in the menopausal period and especially protection from malignant neoplasms. With special attention we created the measures for the marginalized groups, among which we place the Roma population, too. The Strat- egy is really good about what it predicts, however its realization depends on the respon- sible structures in the Ministry of Health. According to me, in order to realize the “National strategy for sexual and reproductive health”, the Minister of Health should bring a decision and hire the whole team which created the strategy to take care of the implementation and, as a body of expertise, to follow how much the in- stitutions of the system implement the provided measures. This was predicted in the strategy itself. One of the components of the Project for improving the sexual and reproductive health was the component for opening Counselings for sexual and reproductive health. The Institute was the organizer and the carrier of these activities. 17 Counselings were
85. 85 opened within the Centers for Public Health and their regional units. They were equipped with a computer, printer, brochures, contraceptives. There were gynecologists, epidemiologists, specialists in social medicine and other experts provided, they were trained for topics from the area of sexually transmitted diseases, safe abortion, contra- ception etc., generally about the sexual and reproductive health, in order to work in the Counselings for reproductive health and to offer health-care services – counseling and advising. The Romani women should use the services of these Counselings. I think that these centers should be evaluated, whether they work, how they function, how many children have come to ask for help, how many contraceptives have been given etc. We need a project that would analyze the success from the opening of these centers. What is your influence on a local level? Prof.Dr.E.Kj.: The connection of my Institute and the local councils is weak. This may pose a bug problem, because I don’t know to which extent the local council implements the national recommendations. The Institute as an institution in the health-care system give expert method- ological help to the Ministry of Health, and the Ministry further brings decisions and indicates what to do next.
86. 86 DEPARTMENT FOR PATIENTS’ RIGHTS “It’s another thing when the patients tell you themselves how they feel when they go to primary health-care protection to see their general practitioner, and how they feel in the secondary. If they wait for 5 hours or they are done in 5 minutes or, if they put them on waiting lists”. Bisera Rahikj, M.S. in public health works at the department for patients’ rights, as an indi- vidual researcher. Through her interview, she will try and give you an image of the function of the department she works at, as well as to give opinion about the patients’ rights in R. Mace- donia and how can the citizens exercise their rights. What is the role and how does the Department for patients’ rights function? B.R.M.S.: The Department for patients’ rights at the Public Health Institute follows and exam- ines the implementation of the health regulations in R. Macedonia and, at the same time, we follow the regulations in the European Union. For comparison, to see what is there, what do we have here. What is missing here is being upgraded here, so we are monitoring the policies of the regula- tions which we are trying to implement. Our department performs deontological analysis of the regulations that the health-care work- ers practice, as well as regulations which refer to the position, rights and obligations of the health-care workers. We participate in creating: new health regulations, changes and annexes of the already existing health regulations. According to you, what is the definition for vulnerable groups? B.R.M.S.: When we talk about patients, they are all vulnerable, however, there is always a dif- ference, for example: young people are definitely the most vulnerable group and we should pay most attention to it. As the most prosperous group in one society, we should direct them towards a healthy lifestyle for these young people so that they can keep and improve their own health, then there are the elderly people, persons with disabilities and the national mi- norities. Can you describe the pyramid of the patients’ rights? B.R.M.S.: The pyramid is made by one Citizen Association in Croatia, there is a pyramid which shows which part of it are the patients (the lowest and most numerous part), we are all po- tential patients somewhere. The second part in the middle are the doctors, health-care donators and the third part are the Health Insurance Funds. What is the essence of this pyramid? It’s presented very well and it goes like this: One patient has nothing to offer to his doctor except for his disease. Going to the doctor is a necessity to ask for a service for yourself in order to improve your health condition. This means that in this pyramid the patients are the most numerous ones and the most vul- nerable ones, in this case they don’t offer anything and they don’t give anything, they just ask for services. The point of the pyramid and its presentation is to pay more attention to the pa- tients and for the other participants in this pyramid to become aware. Of course that the Health Insurance Fund is on the top, they regulate and conduct the whole work.
87. 87 How is the unsuccessful exercise of patients’ rights regulated in our country? B.R.M.S.: We know that in the world, just like here, there are a lot of irregularities in relation to the patients, however before people didn’t have where to go and ask for these rights. Here, this is still not regulated completely, but we hope that the situation will change to better. According to the existing law, it’s predicted for the patients to be able to address in the hospitals, in an office for the patients’ rights, in their municipalities. There should be offices in every mu- nicipality where these people could complain if there was misunderstanding, for example, when exercising their right in order to improve their health condition. B.R.M.S., about the way in which the patients should exercise their rights and how all that is supposed to function, says: B.R.M.S.: The patients don’t have a room where to address in the case when their rights were disregarded, to ask for help on a local level. This is the element on which we should work. In order for the citizen to go in his own municipality and there to have an office with a precisely stated team of one independent expert, there should be representatives from the doctors who aren’t supposed to be from that municipality, but from other municipalities. There should be rep- resentatives from NGOs, so a group of people which will work exactly on patients’ rights. However, here I still haven’t heard that this functions in any municipality. Maybe it does, but I wouldn’t know. Is there a time limit in the legal frame for creating such a mechanism? There was a time limit and these offices were supposed to function, but they are still not func- tioning. Do you have cooperation on a local level? We do, at the moment we are organizing seminars for HPV vaccination, we have the mayors’ support, they provide facilities etc. Specifically, there is cooperation of our institution with the local council. PATIENTS DOCTORS HEALTH FUND
88. 88 Where should the patients ask for their rights? B.R.M.S.: The patients don’t have where to ask for help at this moment, in case their rights were disregarded. According to the Law on protection of the patients’ rights15 there should be a Commission for improving the patients’ rights on a local level”. This is the element we should work on. In order for the citizen to go in his own municipality and there to have an office with a precisely stated team of one independent expert, there should be representatives from the doctors who aren’t supposed to be from that municipality, but from other municipalities, and also there should be representatives from NGOs. So, this is one group of people which will work on the patients’ rights. 15 www.pravo.org.mk (Official Gazette of R.M. no.82/8 from 08.07.2008)
89. 89 MINISTRY OF JUSTICE Office for Management of Registers of Births, Marriages and Deaths “Civil registration is the basis of every country. All the institutions ask for data from us, voting lists are made by us, the data about children at a school and pre-school age are being asked from us. So, we have to have correct and filtrated data which will be available so that we can transfer them to the other institutions”. Ms. Jasna Pecevska – a solicitor, Counselor for administrative matters in the Office for Man- agement of Registers of Births, Marriages and Deaths. The interview with this representative was realized in order to examine and acknowledge the problems of the Romani women about access to personal documents, from an administrative point of view, as one of the barriers for accessing the health-care services. To show you better how the Office for Management of Registers of Births, Marriages and Deaths works on a local level we also conducted an interview with the representative from this service in Kumanovo, Mr. Novica Gjorgjevski. Which law covers the registration of a newborn? J.P.: To register a newborn in the civil registration the legal regulations are: Civil Registration Law16 Law on personal names Law on national identification numbers Citizenship Law if one of the parents is a foreign citizen Family Law in cases where there is paternity recognition In general, these are the 5-6 laws connected with the Civil Registration Law When asked “What are the most frequent problems that the Romani women face when regis- tering?”, Mr.Gjorgjevskisaid: “The most frequent problems the Romani women face during civil registration occur when the mother has no document for identification or when she can’t provide a birth certificate from her native country, then when the mother or both parents aren’t registered in the civil registry, or when the mother has deceased and the unregistered person is now an adult, and last, when the mother gave birth in the hospital using someone else’s health-care card”. Ms.Pecevska thinks that one general problem with the Roma people is that they are not reg- istered in the birth registries. In the meantime, these people have their own children and, since they are not registered them- selves, their children also automatically have problems getting registered in the civil registries. 16 www.pravo.org.mk (Official Gazette of R.Macedonia no.8/95 from 15.02.1995)
90. 90 Does one have to pay for a birth certificate? J.P.: The birth certificate, as a document, is paid 150 denars out of which 100 denars are ad- ministrative taxes and 50 denars for the certificate form. The families who are on social support are freed from the administrative taxes. They pay only for the form, 50 denars. What is the procedure when the legal time limit of 30 days is over, what is the price that the parents need to pay to register their child? J.P.: Generally speaking, for the Roma people the administrative taxes are the problem, again I’ll repeat, if the child is registered within the limit of 30 days, the registration is free. If the time limit of 30 days is over, then the registration is done by bringing a decision according to the Law on administrative procedure. The law itself, when bringing the decision, is a subject of administrative taxes that one has to pay for in the amount of 250 denars. So, bringing a decision costs 250 denars, and then you have to pay another 150 denars for the birth certificate. In these cases you have to pay total of 400 denars. On this question, Mr.Gjorgjevskianswered: “Yes, we are familiar that the majority of the Roma people have a problem to pay for the administrative taxes for the birth certificates, so in every single case where the legal conditions about freeing from the administrative taxes are fulfilled, the Romani women are freed from paying the administrative taxes for birth certificates”. What is the cooperation of the Office for Management of Registers of Births, Marriages and Deaths with the hospitals where the babies are born? J.P.: According to the Law on Registration, all obstetrical departments where babies are born must send an application for the registration of a newborn in the period from 24 to 48 hours to the Office for Management of Registers of Births, Marriages and Deaths where the baby should be registered. The hospitals send an application with all data about the baby with first and last name, data about the mother and father, their first and last names and dates of birth. The mother’s previous births are also evidenced in the application. In this application there are all necessary data. All hospitals are obliged to implement this according to the Law. What is the procedure like when the birth happened in domestic conditions? J.P.: Giving birth in domestic conditions is also embarked in the Law on Registration. Due to the fact that the child was born at home, these children ask for more evidence then when they are born in a hospital. In these cases, the Law on general administrative procedure is also used, because the procedure for these children is actually bringing a decision for an additional reg- istering in the Registry. This Law has to be applied because of the phase evidence collection. As evidence, there has to be a medical card that the mother has given birth, an immunization card for the baby that he has taken the needed vaccines since he was born. If it is an older child with 5-6 years or more, there is a demand for a certificate from the school that it follows lectures or a school marks certificate. Also, from the local community there has to be some kind of a certificate that the child lives there. An operative check from the Ministry of Interior is performed. Our service sends a request to the MOI, they perform an operative check on the field, they go and inquire whether the child was actually born there. They ask the locals about the birth of the baby. There is a need of witnesses who will state that there was an actual birth, with the possibility of maybe not being present, but still to know that there was a birth that happened.
91. 91 When the children are younger, it’s easier to determine this, problems occur when the person is an adolescent of 15 or 16 years or an adult over 18 years, who didn’t exist in the system. What kind of measures does the Office for Management of Registers of Births, Marriages and Deaths take if the newborn isn’t registered in the time limit of 30 days? J.P.: If the newborn isn’t registered within the time limit of 30 days, when we have an application about being born in the hospital, first we call the parents. If the parents don’t come to register the baby within 30 days, then we register the baby according to the application from the hospital sent to us. We leave the field for first name blank, then we call the parents to give the newborn the first name. If the parents don’t show up in the provided time period, the law predicts sanctions. According to the Law on Registration, article 31 and article 32, sanctions are predicted. Basically, no one does this in practice, generally, so far, there have been no such actions. Sanc- tions were not initiated against anyone. What to do to improve the situation? J.P.: As I already stated, if the registration is open, then it is free. It’s necessary to work on this problem through: Informative campaigns of the Office for Management of Registers of Births, Marriages and Deaths and the NGO sector, In the hospitals, the administration there and the complete personnel from prenatal, natal and postnatal health-care protection should refer and inform the parents that they are supposed to register their child in the Civil Registry as a precondition for the baby to get a health-care card and anything that will be needed in the future. How to solve the problem with re-registering for a new birth certificate every 6 months? J.P.: According to the decision of the Government of the R.M. from December 2006, at the back side of the birth certificates there should be a stamp (seal) which denotes that the certificate (document) is permanent and has permanent validity. According to this, information was sent to the institutions that demand for these documents not to ask the citizens for a new birth cer- tificate, not older than 6 months. In order not to burden the citizens with additional expenses. Any citizen that submits a request is in charge of the data stated in it. All the institutions have been informed several times, but somehow, with our mentality, that doesn’t last long. The institutions and their employees should be reminded regularly. The participants from the focus groups said that the Social services keep their new birth certificates and the women have to request for a new document whenever they apply for their services, how to solve this situation? J.P.: Yes, that is a problem, we inform the institutions. There have been changes in the Law for general administrative procedure. In the part about administrative procedures for every in- stitution that follows this law. For whatever acts of every citizen, the institutions are re- sponsible to demand the documents from the organs they should get them from. The permanent birth certificate is valid through the whole lifetime; this refers to those certifi- cates that have a stamp confirming such validity. If there are changes to your data, marital sta- tus, address, that is your personal responsibility… Every change should enter the birth certificate, otherwise the citizen will be charged.
92. 92 From F.G. we have information that the Romani women face costly travel tickets, in order to travel to the town where they were born or when the children were born in other towns in R.M. Can anything be done to avoid travel costs (for example women from Kr.Palanka, Kochani, Shtip) just to get a birth certificate? J.P.: As a recommendation, to create strategy through our colleagues, for example, if the woman lives in Skopje, but she needs a certificate from Bitola or Gevgelija, to create an option from the place of birth to send a complete request to the town where she lives, our colleagues will send it by mail to the Department where the certificate is to be issued. The law on Registration predicts electronic issuing of the registers. At the moment we are collecting financial means so that we can start this from 2012. Until then, we will try to create strategy to relieve this process of issuing a birth certificate from one town to another. Mr.Gjorgjevski:“We are also informed that there are cases like this, we are trying hard to make getting birth certificates for those born in another town go the official way. My opinion on the subject is that the legal regulations have to be followed, and most of all to respect the Amending Law on the Law for general administrative procedure (Official gazette of R.M. 51/2011) Your message to the Romani women and the Roma NGOs J.P.: I think that you, as a NGO, according to me, contribute in a very positive way to solve the problems of Roma people who don’t have personal documents. You have the communication with them, you take them to us and we can solve the problems a lot quicker. This cooperation must continue, all that we have is information from the field in order to get them closer to us, because from the office, we cannot handle things.This is a good step forward to get the population closer to the institutions.
93. 93 MINISTRY OF INTERIOR In order to examine the most frequent problems in the process of acquiring citizenship and an ID card for Roma people in R. Macedonia, some questions were sent to the Ministry of In- terior. MOI: How many applications for citizenship of the R. Macedonia were submitted in 2010 on behalf of Roma people? During 2010, there were 93 applications for acquiring citizenship of the Republic of Macedonia on behalf of citizens from Roma nationality. There are 17 applications for citizenship of the Republic of Macedonia in procedure, out of which 11 are for Roma women. MOI: How many applications for citizenship were submitted from Roma people, how many were approved in 2010 and how many rejected? During 2010 there have been 72 positive decisions to give citizenship of the Republic of Mace- donia to Roma people, and 19 of these positive decisions were for Romani women. During 2010 there have been 5 negative decisions to give citizenship of the Republic of Mace- donia to Roma people, and 3 of these negative decisions were for Romani women. MOI: How many applications for an ID card were submitted from Roma people in 2010, how many were approved and how many rejected? During 2010, there were 541 applications submitted on behalf of Roma people. During 2010, there were no rejected applications for an ID card submitted by Roma people. We inform you that we don’t have data about ID cards submitted or issued to Romani women. The Ministry of Interior has an equal approach towards all citizens of the Republic of Macedo- nia, regardless of their national affiliation and for every submitted application for citizenship or an ID card we act in accordance with the Law on citizenship of the Republic of Macedonia and the Law on ID cards.
95. 95 Discussion
97. 97 What one can notice from the realized focus groups is that approximately 50% of the participants cannot exercise their right to reproductive health due to a number of barriers they face. The most frequent barriers that the Romani women face are: unawareness, preju- dices of the rest of the population towards them, but also the ones they keep in themselves, unemployment, social exclusion and stereotypes. Wealth, which means financial possibilities, access to the institutions and equal treatment is unattainable for the Romani women. The fact that only 9,8% of the participants in our focus groups are employed and that 90% of them avoid the antenatal examinations because of financial problems points that the Romani women are far away from the possibility to exercise their reproductive rights. In the Action program from the International Conference for population and development, re- productive health id defined as: A state of complete physical, psychological and social wealth, not just absence of disease or deformity in relation to all issues associated with the reproductive system and its functioning and processes. The health-care protection of persons without health insurance and unemployed persons who actively search for a job and apply in the Agency for employment, and who have stated in writ- ing that they apply only to exercise the right on compulsory health insurance, is made possible with the implementation of the “Program for complete health insurance of citizens who are not health insured for 2011 in the Republic of Macedonia17”. With the implementation of the measures and activities from the Program, every citizen’s constitutionally guaranteed right for health-care protection is provided. However, acquiring the right to health insurance for the Romani woman still remains a problem because the administrative procedure asks for addi- tional financial means. So far, a huge role and help in overcoming the administrative barriers played the NGOs, which through certain project activities managed to help them in acquiring their right to health in- surance. Participant – Bitola: “It takes a lot of time, stamp from the Agency for real estate – Cadester, from the Police, the Financial Office, Labor Office, these documents take a lot of time while we obtain them, while we get them there, sometimes a whole year passes, it’s not a big amount 300 denars, but a lot of trouble, wherever we, the Roma people go, we are considered nobody and nothing”. Participant – Kr.Palanka: “Some may not find this expensive if they were born in Kr.Palanka, but it is for me because I am not from around here, my mother was born in Vinica, one of my children in Skopje, the other one in Kumanovo and I had to pay for transport, sometimes even 50 denars is a lot. I think it exaggerated to obtain a new birth certificate every six months”. Problems which the Romani woman faces with when exercising her rights from the perinatal care According to the data from the Social medicine services at the Public Health Centers in Ku- manovo, Kochani, Shtip and Bitola, in the towns where the research was performed there are gynecological - obstetrical offices which function and which have contracts with the HIF. 17 www.slvesnik.com.mk (no.6/2011)
98. 98 These numbers make the availability of the health-care services of the total population in these towns. It’s important to note that the financial condition of the users has direct influence on the availability of the health-care services. According to the law, examinations at the chosen gynecologist during pregnancy are free. However, all of the participants said that they had to pay for every examination and mother’s card. Even if they didn’t have to pay for financial participation for examinations or treatment, the users have to be able to travel to the health-care institution, to maintain personal hygiene and cover the other expenses. Out of total 102 participants included in the research, 45 are social support users. Having the influence of the users’ financial situation in mind, the gyne- cological – obstetrical care was not available for 44% of them, especially for those who didn’t have health-care cards. In all five towns included in the research, the participants of the focus groups have mother’s cards. Exceptions are several cases since their last birth was more than five years ago and there was no Law on chosen gynecologist yet. There are five cases when the woman didn’t get a mother’s card even though she went to the antenatal examinations. Participant – Bitola: “I don’t have a card for either of my children, I went to examinations, but they didn’t give it to me”. Even though most of the participants had mother’s cards, the health-care workers, the gyne- cologists – obstetricians who conduct the childbirth experienced that the mother’s cards weren’t properly used according to the antenatal instructions defined by the Ministry of Health. Kumanovo Kriva Palanka Kochani Shtip Bitola Gynecological offices which have contracts with HIF 7 2 4 4 7 Gynecological offices which do not have contracts with HIF 1 1
99. 99 Gynecologist – obstetrician: “The mother’s card is not properly filled in, they don’t go to exami- nations regularly and if they have a mother’s card, no examinations are noted inside. There are problems like uncontrolled pregnancy, they don’t do control examinations regularly, they don’t have proper laboratory tests for the last month of pregnancy (one month before labor, they don’t have their blood type determined. I hate to say it, but more than 50% don’t have the blood type”. Based on the Law on Health-care protection, the MoH in 2010 published “Instructions for the practice of medicine based on evidence”, a guidebook with an aim to help the doctors with their everyday practice, how to treat patients with more disorders. In this guidebook there are concrete instructions about antenatal care, how to follow every woman’s pregnancy, how it should look like. According to this, primiparas should have up to ten examinations during preg- nancy, multiparas seven to eight. In the instructions it is also described how to perform an ex- amination. During every antenatal meeting, it’s necessary to offer clear information and explanations in order for the woman to be able to discuss and ask questions. The infor- mation should be given in an easily understandable and acceptable form for the pregnant women, especially for those with additional need, like physical, sensory or intellectual dif- ficulty and for the pregnant women who don’t understand nor read the local (national) language18. Most of the participants in the focus groups said that they went to the preventive examinations regularly during pregnancy, but their understanding of regularity is a minimum of two and maximum of three visits, which is a very lower number from the prescribed one in the “In- structions for antenatal examinations by the Ministry of Health”. Patronage nurse – Shtip: “It’s interesting to state that the majority of the Romani women don’t have a chosen gynecologist. The number of visits, compared to the women from the other nation- alities during pregnancy, is less for 2-3 on average, the other nationalities have 4 and more visits during pregnancy. Within the Roma population the babies are born with a smaller birth weight, height and the Apgar19 is lower compared with the others. They don’t have knowledge about the sexual and reproductive rights. They don’t know what a PAP test is, what rights they have from the preventive programs of the MoH-we have a new program for an annual free PAP test,, breast examination at the chosen general practitioner. In the postnatal care, unlike the other national- ities, they have a bigger percent of breastfed children, for example 99%, which is significant and positive, the Romani mothers breastfeed their children much longer than the Macedonian ones, over a year or even two”. On the other hand, according to the statements of the health-care workers in the five towns, approximately 50% of the Romani women don’t call in for examinations regularly: “…Usually when they get pregnant in the first months and the last couple of months. This means that they don’t follow the rhythm of regular examinations they are supposed to. Sometimes they don’t even have a single visit, or one during the whole pregnancy, if the woman showed up, we know that the mother’s card is issued in the seventh / eighth month of pregnancy”. 18 www.slvesnik (no.168/2010) 19 Apgar is a quick test performed in the 1st and the 5th minute after birth. The points from the first minute show how the baby went through the birth process. The points from the fifth minute show how the newborn is adapting to its new surroundings. Five vital functions are being assessed: skin color, heart rhythm, breastfeeding reaction, muscle tonus and breathing/ http://www.nih.gov/edlineplus/ency/article/003402.htm
100. 100 However, in a certain number of Romani women there are changes in the attitude and habits, in the sense of improving by going more often to the chosen gynecologist. Participant – Kochani: “I didn’t go with my first child, then with the second I went twice, with the third one I went regularly”. As a method to initiate the regular examinations in Romani women, in some towns they were scaring them that they won’t be admitted when their birth-time comes or that their social sup- port and help for a third child will be aborted. Participant – Kochani: “They are intimidating us that if we don’t go they won’t accept us for birth” Participant – Kochani: “If you don’t go regularly with your third pregnancy, they won’t give you the financial help for third child”. Participant – Bitola: “They say that if you don’t go regularly, they won’t take care for you, but to give every month 200 denars, ultrasound 150, blood analysis 50 and mother’s card 50”. We suppose that this method of “motivation” for regular control of their pregnancy is due more to the expressed focus towards diagnosing and treatment, and less towards activities that refer to health-care education and enlightenment. In the qualitative analysis from the focus groups, in a small number of participants, the fear and the risks from pregnancy are manifested as ‘uninterested’ for regular visit to the chosen gynecologist during preg- nancy. This attitude is a result of insufficient education about the risks and the advantages of the preventive examinations during pregnancy. Participant – Bitola: “I wanted to know what sex it was, so I went with my husband and that was it, just to see the sex of the baby”. Participant – Bitola: “If you don’t have the means, you don’t go, the children will be hungry, you won’t eat…” Participant – Kr.Palanka: “I go only when I have money”. Maternal and Children’s Health Bureau: “The commercialization of the primary health-care protection, especially the gynecological offices, represents a problem which decreases the avail- ability for the Romani women in the reproductive period. The gynecologists don’t identify the Romani women as attractive clients who they could profit from”. The majority of the women in the focus groups i.e. 90% are economically dependent from their spouses i.e. the community they live in and their role in the family is limited to keeping the house clean, giving birth and raising the children which affects negatively on their own health-care and leads to minimal dedication to the reproductive health protection. Participant: “I am not regular, I wait for my father-in-law to take money so that I can go to ex- aminations”. The Romani woman most often connects the visit to the chosen gynecologist with serious health problems. This is influenced by the degree on which the information system functions about the need and meaning of the preventive health examinations, pregnancy control and care about their own reproductive health, as well as the degree of education.
101. 101 Participant – Bitola: “I didn’t go because I knew that everything was fine, I didn’t need to go”. 50% of the participants included in the research don’t have education, 27,45% didn’t complete their primary education and 92,2% don’t have their own financial incomes. This condition ex- plains the big unawareness from the benefitfrom preventive examinations. But it also indi- cates how unavailable the preventive health-care activity from the financial point of view is for the Romani women. Participant – Bitola: “It used to be better, it was free and when you want, you can go, with my twins I used to go regularly, I delivered them in my 7th month, I went twice a month, but now I don’t”. The Romani woman doesn’t have any knowledge that after birth she also needs control ex- aminations at her chosen gynecologist. The fact that none of the participants in the focus groups went for a visit at the chosen gynecologist after birth is concerning. According to the statements of some of the participants, visiting a gynecologist is generally considered to be an embarrassing act accompanied with the feeling of shamefulness. This embarrassment is even bigger when the gynecologist is a man. Most of them are fine with the ultrasound examination, even when it is not indicated. Participant – Shtip: “I feel more comfortable when it’s a woman, when it’s a man I can’t speak freely”. Participant – Shtip: “We usually demand for women gynecologists, but sometimes there are men, you bow your head and just listen, it’s uncomfortable, it’s totally different when a woman examines you, when it’s a man you get confused and you don’t know what to ask”. During the antenatal controls from the clinical examinations, according to the statements of the participants, the following examinations were most often performed: ultrasound (echo), blood analysis test to follow anemia during pregnancy, urine culture and a gynecological ex- amination. The participants that went to preventive gynecological examinations usually had twice or three times more often a blood test performed and with the ones suffering from ane- mia even more often. In several cases, there were no blood analysis tests at all. As for the other examinations, the participants in the focus groups said that there were gynecological exami- nations, determining body weight and blood pressure, urine culture. The most frequent ex- amination during pregnancy which was performed by the doctors, according to the participants, was the ultrasound. Some examinations were overseen as microbiological smears, breast control. There are participants who didn’t even have their blood pressure determined or blood analyzed. The monitoring of the blood pressure is an important segment during an- tenatal care and in the beginning of the pregnancy, as well as monitoring the changes during pregnancy 20. Participant – Bitola: “I went to examinations regularly, I only had ultrasound, he never measured my blood pressure, I never did a single blood analysis test, yet I paid 350 denars for the mother’s card”. Participant – Bitola: “I never had it measured, he never told me that I should and I went regularly”. 20 Blood pressure must be determined during every visit because it can increase in a very short time period, http://www.moh-hsmp.gov.mk/fileadmin/user_upload/Dokazi/Ginekologija.pdf
102. 102 21 www.sl.vesnik.com.mk (no.50/2010) The instructions from the MoH about prenatal care predict additional care that would be necessary for some of the pregnant women, like the socially disadvantaged women, women at the age of 19 years, women multiparas. Among the participants in the focus groups there was no such additional care performed even though the majority of the par- ticipants belong to these categories. As one important element, which represents a difficulty in the antenatal care, the participants have stated the language barrier. Although the representatives of the health-care institutions claim that there is no such barrier, the participants themselves stated that quite often the ter- minology used by the doctors isn’t understandable for them. One obstetrics nurse from Kriva Palanka considers that the Romani woman will just listen without even understanding what she is listening to, and that this is connected with the edu- cation level. Surpassing the language barrier in the postnatal period was achieved in Shtip where, in the polyvalent patronage service, there is a patronage nurse who speaks the Roma language or uses a language that is understandable for the Romani women. Participant: “The doctor uses medical terminology which isn’t clear for us”. Unpleasant experiences of the Romani women when using perinatal health-care protection The participants of the focus groups during the interviews also shared some unpleas- ant experiences with the health-care workers, while using services from the health-care pro- tection during pregnancy, childbirth and breastfeeding. Out of the 102 participants in the focus groups, seven experienced discrimination in the way of underestimation on behalf of the health-care workers while using services from the health- care protection during the period of pregnancy. One of the reasons they give as a degrading is that they were left to wait in a line because other patients who are not from Roma ethnicity would enter before them. As a second reason the participants perceived the appearance of the patients and the way they were dressed. If the woman had a light complexion, if she was well- dressed, the approach of the chosen gynecologists was kind. In the opposite case, if the woman wasn’t dressed well and she had a darker complexion, then the approach was rude. Because most of the participants are unemployed and live in poverty, we cannot exclude the possibility that these experiences were of much wider range. According to the Law on discrimination, a discriminatory behavior and acting is any active or passive behavior of a person from the public affairs, as well as physical and legal entities from the private or public sector in the social life, which puts basis for privileging or un-privileging another person in a way that is not justified or if he/she is exposed to an unjustified and de- grading attitude in comparison to other persons in similar situations, on any of the discrimi- natory basis21.
103. 103 Participant – Bitola: “It’s all right, you just wait to be told quickly and just go out so that another woman comes in, if there is a wealthier one, she goes in first an only then me”. Participant – Kriva Palanka: “I have a remark, when Romani women go to examinations, we are always underestimated by the doctor, they don’t let the Romani women in because they aren’t dressed up, we never have priority, sometimes we wait from the morning till the evening”. Participant – Shtip: “There is no separate room for Romani women, but for daughters of man- agers, or daughters-in-law, for them there is special treatment, they go in another room, their closest family can get in the rooms and they can see the babies, and for the rest of us there is only one small window and we have to peek through it”. Other participants expressed dissatisfaction from the chosen doctors indirectly pointing that the doctor was examining them quickly and addressing them in a jokester way (with ridicule) which for them was really humiliating. Participant – Bitola: “If the baby is a boy, you’ll whistle. He is ridiculing us. This is how he behaves with us, but with the Christian people it’s different”. Some of the participants think that the doctor didn’t pay enough attention and didn’t tell them the truth. This view goes even into suspecting the expertise of the gynecologist. About 30% of the participants express direct or indirect dissatisfaction about the attitude of the chosen doc- tor towards them. The biggest dissatisfaction from the chosen gynecologists is apparent in Ku- manovo and Bitola. Participant – Bitola: “He calls us – sister, Gypsy, cousin” Participant – Kumanovo: “He just wants to get rid of me, he takes a look for 2-3 minutes and that’s it, he never gives advice how to behave, what to eat, what to use during pregnancy, he doesn’t say anything of this and that is why I am not satisfied with him”. This can be an additional discouraging factor for even weaker interest and use of the preventive antenatal health-care services from the chosen gynecologists. Not knowing the rights of the patients about free preventive antenatal examinations eliminates the awareness of the patients that their rights have been directly violated and that the doctor is abusing their ignorance. Due to this, the percent of women satisfied with the services that the chosen gynecologist offers is bigger, and they connect their satisfaction with not having to pay right away for these services, but which they should get for free, in accordance with the law. Another factor which influences these statements is the fear of expressing dissatisfaction from the services of the chosen gynecologist and the abused payments, because of fear that they won’t be let go to examinations again. Patronage nurse: “We tried to get into contact with the Fund and we told them about these prob- lems, from the Fund they told us to send them a written request and also, for the patients to ask for their own rights. The women then answer, and then when we go to the gynecologist, who will examine us then. Many times we advised them to ask for a bill when they are charged for the serv- ice, to prove that they paid for the service received. Then they say ‘if I ask for it, how do I call in for examination next time?’ The Ministry demands to report all irregularities, but we cannot re- port them because the women themselves do not want to report the doctors”.
104. 104 In the period of childbirth, the participants describe the dissatisfaction from the medical personnel as a rude behavior on behalf of the doctors and the mid-medical personnel and con- sider that they look after those with friends or families in that institution a lot better and also they pay more attention to them. One of the participants even experienced rude behavior from the janitor. Participant – Bitola: “Only if you know someone important, then they’ll stay with you all the time and examine you and everything”. From the statements of the participants, it is obvious that they don’t know anything during their first childbirth about the act itself, they are frightened and don’t know what to expect, some of them don’t understand the terminology used by the medical personnel. When asked “Do you understand the meaning of the word maternal stalls, intensive care, infusion, CTG..?” the participants said that for the first child they didn’t know, but with the second they already knew (this answer appears in all target towns): Participant – Kumanovo: “…they yelled at me push, push – and I didn’t know what that means. They yelled again at me come on chae push, but I got lost. I was confused and scared and lost my contractions, then they had to give me injections and finally the baby was born”. Participant – Kochani: “It was my first child and I didn’t understand anything, especially why they yell at someone who is in pain”. Participant – Shtip: “I was scared with my first child, but with the second things got clearer”. On a national level, education was performed to the medical personnel for prenatal preparation in 32 towns. The prenatal preparation aims to prepare the woman for birth, to release her from the fear she feels before this act. From our research we get to the fact that such prenatal preparation functions only in Shtip. It’s so discouraging that this type of preparation is not at all visited by the Romani women. All knowledge about childbirth the Romani woman gets based on her own experience. Most of the participants, especially in Bitola, give their subjective views about a different atti- tude towards them during birth and after birth, in relation to the other patients who are not from the Roma ethnicity. Several participants expressed a subjective feeling of a painful and rough gynecological exam- ination by the gynecologists. The dissatisfaction is even greater from the mid-medical person- nel, due to which they tend to go to labor in the last moment. Some of the participants in the focus groups have experienced giving birth on their own in the hospital while the medical per- sonnel arrived to help them. Participant – Bitola: “It’s the same for every disease. The doctors don’t see you as the Christian people, when they see a Christian, they look at him differently, they treat the Roma people differ- ently”. Participant – Bitola: “I put up with the contractions at home” Participant – Bitola: “ Until I see it coming out, I don’t go”. Participant – Bitola: “I gave birth to two at home, two in the hospital”. Participant – Bitola: “Yes, when the Macedonians give birth, they go to them and ask them, but they don’t pay attention to us”.
105. 105 During their stay in the hospital after birth, the Romani women had unpleasant experiences. They said that they are discriminated because their access to hot water was limited in order to maintain their personal hygiene. Often they were forced to bathe with cold water. The ma- jority of the participants consider that it is needed to treat the personnel in order to get clean sheets. Some participants say that they are forced to bring sheets, night gowns, spoons and forks from home, and also to buy tarpaulin for the bed, gloves, infusions etc. About the breastfeeding period which is directly dependent on the polyvalent patronage serv- ice, all participants stated satisfaction and trust. The participants consider that the advice and the practical demonstration during the visits were useful. They also think that the number of the visits should be bigger. One patronage nurse says that the health-care institutions generally offer health-care services to the whole population in the range of their possibilities, depending on their professional training, equipment with tools and instruments for work, however, she points that it’s neces- sary to improve the communication with the patients and, of course, with the Romani women. Patronage nurse: “Sometimes a warm word is all that it takes, one kind gesture, so to say, a smile on your face and in your eyes. Sometimes this communication is extremely important for both Romani women and the other patients”.
107. 107 Conclusions and recomendations
109. 109 A complete implementation of the Preventive programs with a special accent on the Romani women in order to improve the access to preventive examinations during pregnancy; To improve the Romani woman’s capability to protect her full reproductive health through increased information receiving, good-quality access and using the rights and services that work on the enhancement and strengthening of the woman’s re- productive health; To regulate of the One-Stop-Shop system for issuing of personal documentation; To actualize the prenatal preparation in all towns; To actualize the function of the Romani mediators; For the doctors to strengthen their cultural competencies and to become sensible about the cultural specifics of the members of the ethnical communities in the pri- mary, secondary and tertiary health-care protection; To strengthen the availability to the health-care services through health-care promotion; To implement the antenatal instructions for work completely and in practice; To create a monitoring system about the implementation of the antenatal instruc- tions and the preventive programs in order to respect the Law on patients’ rights; To open the offices about the patients’ rights, predicted by law, which will enable the equal participation of all ethnical communities; Within the preventive programs, to plan health-care education directed towards the Romani women; To improve the institutional cooperation and communication among the institutions on a national and local level in order to realize a complete implementation of the laws from the area of health-care as well as the programs intended for the citizens.
110. 110 ANNEXES 1.Protocols from the focus groups 2.Questions from the focus groups 3.Example of the agreement for personal data protection from the participants in the focus group 4.Protocol and questions from the interviews 5.Example of the agreement for interviews from representatives of institutions 6.Letter from the Ministry of Justice, Office for Management of Registers of Births, Marriages and Deaths 7.Letter from the Ministry of Interior
111. 111 ANNEX 1 Protocol and methodology for the realization of the focus group MAC 05 Focus groups topics The identification of the conditions and problems during the prenatal and natal period in Romani women in Kumanovo, Kriva Palanka, Bitola, Kochani and Shtip. The application of the method of focus groups was chosen for this research in order to motivate and encourage the Romani women to give their opinion and share experiences about the pre- natal and natal services during their stay in the hospital which they received from their doctors and the medical personnel. We will try to create an atmosphere of trust among women with group discussions and give them the possibility to speak openly about their experience. . Why the method of focus groups The focus groups are a form of a group interview which capitalizes communication among participants in order to get data. Although group interviews are often used as a simple and fast way to gather data simultaneously from more people. Focus groups explicitly use group interaction as a part of this method. This means that the researcher, instead of asking every participant individually, encourages people to talk about each other by: asking questions, shar- ing anecdotes and commenting their own experiences and views22. This method is especially useful to research people’s knowledge, shared experiences and it can be used to examine not only what people think, but also why they are thinking like that. “Focus groups are a form of qualitative research where a group from a group of people asks to give their own perception, opinion and attitude towards a certain product, service, concept or idea. The discussion in the focus groups is an empirically well-positioned method which aims to collect qualitative information and to get to the people’s opinion and their feelings about certain issues. The aim of the focus group is to collect information about the experience of the vulnerable groups connected with governmental services on a central and local level, especially in the area of providing services i.e. direct contact with the citizens and the public administration.23” Leading the groups The sessions need to be relaxed: comfortable sitting, refreshment and sitting in circles helps to achieve the wanted atmosphere. Ideal size of the group is between four and eight per- sons. The sessions can last one to two hours (or the whole afternoon or a series of sessions). The facilitator should explain the aim of the focus group and to explain the participants that 22 Caplan, S. (1990). Using focus groups methodology for ergonomic design. Ergonomics 33(5), 527-533 23 Kitzinger J.The methodology of focus groups: the importance of interactions between research participants. Sociology of Health and Illness 1994;16;103–21. http://www.bmj.com/content/311/7000/299.full#ref-1
112. 112 they should discuss one with another more than talk with the researcher. The researcher can sit on the last chair at the beginning in order to achieve “structured eavesdropping”24. Description and criteria about the choice of participants in the focus groups In order to gather opinion and different experiences of the Romani women in the pe- riod of prenatal and natal care, we will organize 10 total focus groups with Romani women from Kumanovo, Kriva Palanka, Kochani, Shtip and Bitola. The participants will be chosen from the existing database of the NRC for Roma families created within the education campaign “The key is in your hands” with data from 15 towns in the R. Macedonia. Every participant will be chosen randomly. We will choose a total number of 100 participants and invite them in 5 towns. In all 5 towns we will cover the 100 participants. In every town we will hold 2 focus groups with the longest duration of 2 hours for a group. We consider this pe- riod will be a good-quality time for a fruitful discussion in the focus groups. It is possible to prolong the time with a specific group if there is a need from translation or additional expla- nation about the questions. In each focus group there will be 15 women invited who are expected to meet the following criteria: age between 15-35 years, speak Roma or Macedonian language, gave birth in the last 5 years, live in a Roma district or integrated area, education level (semi-literate, primary education), working status (unemployed) number of births (1-3 children). This number of invited people is definite because in every focus group there will be a maximum of 15 participants. This number is preferred in order to maintain the atmosphere of balance and equal participation of all women. Unemployment is taken as a condition because many of the unemployed women face the problem of not having health insurance. Women who gave birth more than twice are exposed to not receiving appropriate health-care services or medical treatment during pregnancy or birth. The group will be homogenous (according to age, education and number of births) in order to initiate a productive discussion among participants. In order to identify and include good-quality participants and because the NRC hasn’t previ- ously worked on the topic health-care protection, two representatives from the Roma districts will be included in Kochani and Shtip, one from Kochani and one from Shtip, who will invite the women. Our goal is to motivate the participants to be active in the research and the analysis of the re- ceived services from the health-care workers and, at the same time, to encourage them to ac- knowledge their rights according to the Law on patients’ rights. 24 Powney J.Structured eavesdropping. Research Intelligence (Journal of the British Educational Research Fountion) 1988; 28:10–2. http://www.bmj.com/content/311/7000/299.full, http://www.shoppersciences.com/qualitative-eavesdropping/
113. 113 What is the aim of the focus groups? The aim of the focus groups is to examine the approach and the quality of the services in the health-care institutions and to identify the questions that affect the access to health- care protection of the Roma women with an accent on the reproductive health. Description of what we want to discover with the focus groups, Research question From the focus groups we will gather qualitative data to identify the problems of the Roma people in: Kumanovo, Kr.Palanka, Kochani, Shtip and Bitola in the area of health-care protection during prenatal period. We will try to gather qualitative data about the level of the women’s rights that are available to them as patients (especially the Law on patients, whether they know which services they should receive as a health insured person). We will try to gather qualitative data about the access of the Romani women to gynecological examinations during pregnancy, access to the gynecological departments and the received care after birth – visits from nurses, employed in the patronage service. We will try to gather qualitative data from all the focus groups, which will enable us to ac- knowledge and understand the way of implementation of specific health-care services, with a special focus on the services acquired through the following preventive programs of the Min- istry of Health: Program for modification of the program for active health care of mothers and children in R.M. in 2011, Program for complete health insurance and health-care protection of the citizens who aren’t health insured for 2011. With the data collected from the focus groups we will have arguments to represent the insti- tutions with the need of the participation of the Roma people in the process of decision and finding possible solutions for the existing problems, through different forms of cooperation. One argument for the participation will be the language barrier which exists between the Ro- mani women and the health-care workers, as well as the lack of information for their rights hen accessing services from prenatal and natal care. Who will the results from the focus groups be intended for? The results from the focus groups will be presented and sent to the representatives from: the Ministry of Health, Government and the Parliament on a national level. The analysis will also be used for informing the European commission and the United Nations on an inter- national level. They will also be used for the method “Monitoring of the community for moti- vation of the Roma community and active participation in the social processes”. The results from the focus groups and the changes in the legislation, which will be initiated or accepted by the Ministry of Health and the Ministry of Justice, will be presented in the Roma community by the end of the activities of this project.
114. 114 Time frame for organizing the focus groups Table for organizing the focus groups with women, gantogram for organizing F.G. MAK 05 Based on the acquired data, we identified the following number of women who will participate in the focus groups: Kumanovo – 71 Kriva Palanka – 18 Kochani – 58 Bitola – 59 Shtip – 30 Month 2011 21.04 F.G.1 / F.G.2 27.04 F.G.3 / F.G.4 28.04. F.G.5 / F.G.6 11.05 F.G.7 / F.G.8 12.05 F.G.9 / F.G.10 Kumanovo Shtip Kriva Palanka Kochani Bitola
115. 115 Choosing the participants for the focus groups Indicators about the number of population and the manner of choosing the participants for the focus groups 25 http://www.stat.gov.mk/publikacii/knigaI.pdf 26 http://www.stat.gov.mk/publikacii/knigaI.pdf 27 http://kocani.gov.mk/linkovi/naselenie.htm 28 http://www.stip.gov.mk/index.php?option=com_content&view=category&layout=blog&id=43&Itemid=62&lang=mk 29 http://bitola.gordsys.net/?nacionalnost Town Number of Roma population Official statistics Number of Roma population and unofficial data, NRC data Manners of identification of the target group Kumanovo 2.14825 3.29 We will identify the women from the database of NRC. The focus groups will be held in the MRC Informative Center. Kriva Palanka 33026 500 NRC has a database created within the project “Prosperity and health for the Romani women”, as well as a data- base from the campaign for education “The key is in our hands”. Kochani 987=5,12%27 1.986 One person will work on field to identify the women who are the target group in the project. The focus groups will be held in the local council or rented facility. Shtip 2,19728 1.808 One person will work on field to identify the women who are the target group in the project. The focus groups will be held in the local council or some of the local NGOs who work with Roma people. Bitola 2.613=2,74%29 1.081 The focus groups will be held in cooperation with the Roma NGOs in Bitola or the local council.
116. 116 ANNEX 2 Questions for the focus groups with women MAC 05 Introduction to the questions, short presentation why the focus groups are gathered, asking for agreement from the women to record the discussion. The agreement will be signed before the discussion. Questions about the possession of personal documentation, ID cards and access to the basic human rights Do you have personal documents? If NO, why not? Are your children registered and do they have personal documents (birth certificate and health-care card)? If No, what is the reason? What is your opinion about the administrative taxes for newborn registration and birth certificates? Are they too high? Are they acceptable? What is your opinion about it? Are you employed? If YES, where and are you health insured through your work place? Are you a social support user? Since when? How long have you been using social support? Do you have health insurance? If NO, why not? Questions referring to the observation of the access to health-care services in the prenatal period Do you have a chosen gynecologist? If NO, why not? How many times have you visited the chosen gynecologist during pregnancy? If NO, why not? Explain your experience. Why didn’t you visit a gynecologist during your pregnancy? What is your experience with your chosen gynecologist? Did you have a mother’s card during pregnancy? What type of examinations has your gynecologist performed during your pregnancy? Have any of your children died during birth (before or after birth)? If YES, what were the reasons? Did the doctor explain the reason for death? Was that explanation clear? Questions about the women’s experience from the moment of admission in the hospital in order to give birth and the quality of the service What was your birth experience? What was your experience in the hospital after you arrived to give birth? Did they ask you for money? Explain your experience. Were you given the service immediately? If NOT, what was the reason? How much money did they ask from you for childbirth?
117. 117 Did you have a spontaneous birth or with surgical intervention? What was your experience? What was your experience? How did the doctor treat you? Did you have a separate room only for Romani women? Did they accommodate you in a separate room while giving birth? Who assisted during birth, a doctor or a nurse? If nurse, what was the reason for the absence of the doctor? What was your experience with the nurses? Did you need therapy after birth? If YES, did you receive adequate therapy after you gave birth? Questions that refer to the quality of the basic hygienic conditions in the hospital Did you have an appropriate bed in the hospital with clean sheets? f NO, what was the reason for not having a bed or clean sheets? Did you take a shower in the hospital? Was there hot water to take a shower? Did the baby have clean diapers? Were the diapers changed on time? If NO, what was the reason? Questions about the quality of the services during neonatal care What was your experience with the patronage nurses in your house? Were you visited at home? How many times have you been visited at home? If NO, what was the reason? Was the advice given by the patronage nurses useful to you?
118. 118 ANNEX 3 AGREEMENT On day _____________ I, __________________________________________, born on _________________________ in ______________________, with place of residence ___________________________________________________, town ___________________________ give my agreement to participate in a focus group, organized by the Association of citizens National Roma Centrum (further in the text NRC) within the proj- ect Health inequalities towards the Romani women supported by the Romani health program, code of project V0027. I agree for my personal data to be processed within this project, for which the NRC will provide suitable protection, and I agree that an audio recording will be made of the conversation. ________________________ Agreement given by Date _______________________________
119. 119 ANNEX 4 Protocol for interviews with institutions “Health inequalities towards the Romani women” is a project which the NRC imple- ments in order to gather data from the experiences of the Romani women in the access to the health-care services during prenatal, natal and postnatal period. Introduction In order to examine the practical application of the laws, the existing mechanisms and services which the users should receive, and which are within the institutional jurisdiction, within this project there will be interviews realized with representatives from the Ministry of Health of the R. Macedonia, Public Health Institute of the R. Macedonia, representatives of the gynecol- ogical – obstetrical departments, Counselings for reproductive health, Health Insurance Fund of the Republic of Macedonia and the Office for Management of Registers of Births, Marriages and Deaths at the Ministry of Justice of the R. Macedonia. The questions will cover the problem of the Romani woman, who faces multistage discrimi- nation on all social levels. The mechanisms which exist and function as well as the services that the Romani woman re- ceives during the reproductive period and are in accordance with the Law on health-care pro- tection. With this project at least 30 interviews have been predicted, a number that is suitable for the comparison of 102 participants from 10 realized focus groups, a number of women which share their experience from 5 towns: Kumanovo, Kr.Palanka, Kochani, Shtip and Bitola. After the realization of the interviews, the interviewed representatives of the institutions will be sent the conclusions, in the form of a resume, so that they can verify the gathered informa- tion on their behalf. The data will be used to make a comparison of how much the health-care services which cover women in the reproductive period are available for the Romani women. How and what are the barriers that the women mostly face, and are conditional for the un- availability of the health-care services to the Romani women. The research will be published and will be available to all participants and the public in the R. Macedonia and wider. They will also be collected and published in a document with recommendations for applied policies (policy brief). The experiences will also be presented in front of the Roma community, an activity which will be applied according to the method of social responsibility in order to increase the awareness for the importance of health and the benefits from a timely and functional health-care protec- tion.
120. 120 Information about the project and a request for agreement from the interviewed person Are you willing to record this conversation? Are you willing to quote your answers? Are you willing to allow the use your first and last name and position when quoting, or would you like for us to use your initials only or to remain anonymous. General questions: Are you familiar with the health-care condition of the Roma people (Romani women) in the R. Macedonia? What are the actual policies of the Ministry of Health to improve and prevent the Roma people, Romani women health? Do you have statistical data about the number of Roma patients on a national level? Ministry of Health What types of preventive programs exist in the area of reproductive health? If they exist, do they target the question of reproductive health? Who is monitoring the gynecological departments on a national and on a local level? Do you have information how satisfied the patients are with the new changes in the law? Health Insurance Fund I’d ask you to present briefly the jurisdiction of the Fund and its connection with the remaining health-care institutions. How many Roma insured people do you have? In what type of insured persons would you classify the Roma people, Romani women? How much does the capitation program cost for a patient at the chosen gynecologist? Do the chosen gynecologists report about the realization of the free gynecological examinations on annual level? If they do, how do they report about the realized free examinations? How much does one gynecological examination cost? How much does childbirth in a state health-care institution cost? Which services are free for patients during labor? Which services do they have to pay while they are during labor? What measures can the Health Fund take for patients who receive social support and cannot afford to pay for medicaments and services during their stay in the hospital? Maternal and Children’s Health Bureau What is the role of the Maternal and Children’s Health Bureau? How does the Maternal and Children’s Health Bureau contribute in the creation of public policies? What is the target group of your institution? Are you familiar with the part of the health policies on a national level which are in- tended for the Romani women? What services are available for your users? Where do you take the information you process from? What are the most frequent problems among the Romani women according to your opinion.
121. 121 Can you give us a more detailed description about the right on free childbirth, what services are encompasses with this right? Is the given therapy after birth charged for? What is your message to the Romani women and the Roma NGOs? What is your message to the institutions which treat the issue of health? Public Health Institute (sectors and departments for interviews) Sector for promotion, analysis and following of the non-infectious diseases Suggests measures for solving the health needs of the population How long does your sector exist and what is its role within the Public Health Institute? How many departments form the sector for promotion and following of non-infectious diseases? What are the most common non-infectious diseases that the Roma population faces in the R. Macedonia? Is there statistical data about the most frequent problems that the Romani women in the R. Macedonia face? If there is, can you give us concrete information? Are you familiar if there are concrete measures about the solution of the health-care problems that the Roma population faces in the R. Macedonia? What is your information about the needs of the Romani women in the area of repro- ductive health? Do you have information about the problems from perinatal care that the Romani women face? What are they, according to you? What is your experience in getting charges for the violation of the patient’s right in the prenatal, natal and postnatal period? If there were, what were the charges like and what was their number? Department for reproductive and adolescent health and the vulnerable groups What are your assignments in the area of reproductive health? How does your department work on a local level? Can you describe the vulnerable groups and who is encompassed within this group? Do the Romani women fall under this group? What kind of services do you offer to your patients? Department for protecting patients’ rights with medical deontology What is the role of your department for protecting the patents’ rights? How do you observe patients’ rights? How many cases so far do you have registered for the violation of patients’ rights? What are the most frequent areas in health care where patients’ rights are violated? Are the patients’ rights violated more in the primary or in the secondary health-care protection? Do you have information that the rights of the Romani women patients have been violated?
122. 122 Do you have information that the gynecologists say to the women during birth that when they make babies it doesn’t hurt, but they yell a lot during labor? What is your opinion about this occurrence? What is your experience in the surveillance of the relation doctor-patient at the gyne- cological departments? Gynecological – obstetrical departments in Kumanovo, Kriva Palanka, Kochani, Shtip and Bitola What conditions there are for a patient to be admitted for childbirth? How many patients give birth on a daily basis in your gynecological – obstetrical de- partment? How many of them are Romani women? Who is responsible to admit the women for birth? Who examines the women when they are hospitalized? Who participates and is present during childbirth (doctors, medical nurse or an ob- stetrics nurse)? What is your experience in the communication with the Romani women? Do you understand the Romani women when you talk with them? What are the most frequent health problems that the Romani women face during birth, and what after labor? Counselings for reproductive health What is your role as Counseling for reproductive health? How long is this Counseling for reproductive health functioning? What is your target group? How many users have visited you so far? Do you have counselors from the Roma nationality? What type of advice do the Roma users come to ask you for? Office for Management of Registers of Births, Marriages and Deaths Can you tell us what problems the Roma people mostly face when registering in the Birth register? What is your experience in working with Romani women when it comes to the matter of personal documentation? Does the registering cost and what is the price? What are the legal regulations about the registry of newborns? Do you receive notifications from the gynecological departments with a list of newborns? Which legal acts cover childbirth in domestic conditions? Please describe the procedures in more detail. List of interviews Minister of Health Ministry of Justice, Office for Management of Registers of Births, Marriages and Deaths Skopje Ministry of Interior Health Insurance Fund of the R Macedonia
123. 123 Maternal and Children’s Health Bureau, Sector for health promotion and following of non-infectious diseases – prof. Elena Kjosevska Patients’ rights department – Bisera Rahikj, M.S. Gynecologists at the gynecological – obstetrical departments in 5 towns Chosen gynecologists Office for Management of Registers of Births, Marriages and Deaths Kumanovo Medical nurses at the gynecological – obstetrical departments in 5 towns Counseling for reproductive health in 5 towns (depends if there are open Counselings for re- productive health in every town) Kumanovo Kriva Palanka Kochani Shtip Bitola Kumanovo Kriva Palanka Kochani Shtip Bitola Kumanovo Kriva Palanka Kochani Shtip Bitola Х Х
124. 124 ANNEX 5 AGREEMENT On day _________________ I, ____________________________________, born on _________________ in ______________________, with place of residence _____________________________________________, town___________________ give my agreement to participate in an interview, organized by the As- sociation of citizens National Roma Centrum (further in the text NRC) within the project Health inequalities towards the Romani women supported by the Romani health program and the AMHI New York, code of project V0027. I agree for my personal data and my answers to be processed within this project, for which the NRC will provide suitable protection, and I agree that an audio recording will be made of the conversation. _________________ Agreement given by Date _______________________________
125. 125 Republic of Macedonia Ministry of Justice Office for Management of Registers of Births, Marriages and Deaths To: NATIONAL ROMA CENTRUM 11/5 Done Bozhinov St. 1300 Kumanovo SUBJECT: Information LINK: Your no.172-10/11 from 01.11.2011 Dear Sir/Madam, Concerning your act no.172-10/11 from 01.11.2011 which refers to a Request for answers of questions in relation to the functioning of the Office for Management of Registers of Births, Marriages and Deaths, we inform you: In the Office for Management of Registers of Births, Marriages and Deaths there is no electronic data registry i.e. the Office for Management of Registers of Births, Marriages and Deaths collects data about births, marriages and deaths only in written form. We also inform you that in the Office there are annual reports about the total num- ber of issued certificates from the Registries of births, marriages and deaths for all towns in Macedonia, but we don’t have information about how many Romani women applied for birth certificates. As for the second question, I have to repeat that checking for data would again be manual by directly checking in Birth Registries, but that would last too long considering the current campaign of the Ministry of Transport about the renewal of documents for the social support users, knowing that on the list of documents that the Social Centers require and certificates about births, marriages and deaths in the families of the social support users. ANNEX 6
126. 126 Republic of Macedonia Ministry of Justice Office for Management of Registers of Births, Marriages and Deaths Concerning the difficulties that stop the Romani women from registering their children on time and in the legally prescribed time limit, following the experiences of the Office for Man- agement of Registers of Births, Marriages and Deaths about this issue, we inform you: First reason is, most of all, the insufficient education and awareness among the members of this population in relation to the need of registering their children in the Reg- istries. Also, another reason is that the parents themselves do not possess documents for identification and they give birth with someone else’s health-care cards and then subse- quently, there are problems for registration in the Birth Registry. Thank you for your cooperation. Respectfully. MANAGER, Ashim Zekjiroski
127. 127 Republic of Macedonia Ministry of Interior To: NATIONAL ROMA CENTRUM Kumanovo 11/5 Done Bozhinov St. SUBJECT: Reply LINK: Your act no.297-11/11 from 16.11.2011 Concerning your request for delivering data about the total number of submitted requests for citizenships and ID cards and received during 2010 for Romani men and women on a national level, we inform you that during 2010 there have been a total of 93 requests for acquiring citizenship of the Republic of Macedonia from the citizens members of the Roma community. 17 requests are in process for citizenship of the Republic of Macedonia, out of which 11 are for Romani women. During 2010 there were 72 positive decisions by which Roma people are given cit- izenship of the Republic of Macedonia, out of which 19 are positive decisions for Romani women. During 2010 there were 5 negative decisions by which Roma people are rejected citizenship of the Republic of Macedonia, out of which 3 are negative decisions for Romani women. During 2010 there were 541 submitted and processed requests for issuing ID cards for Roma people. During 2010 there have been no rejected requests for ID cards submitted by Roma people. We inform you that we have no information about submitted and issued ID cards for Romani women. The Ministry of Interior of the Republic of Macedonia has an equal approach to- wards all citizens of the Republic of Macedonia, regardless of their national affiliation and for every submitted request for citizenship and ID card acts in accordance with the Law on citizenship of the Republic of Macedonia and the Law on ID cards. Respectfully, ASSISTANT MINISTER Osman Ljimaj ANNEX 7
128. 128 DEFINING THE TERMINOLOGY Under reproductive health we understand enabling people to have: a responsible, satisfactory and safe sexual life. At the same time to have the possibility to reproduction and the right to decision, when and how often. Implicitly here are also the rights of men and women to be informed and to have access to effective, acceptable and available methods for birth con- trol on their own choice. As well as the right to access to appropriate health-care services, which will enable them healthy pregnancy and childbirth for the women and give couples the opportunity of having a healthy newborn. Reproductive period of the woman is the period from 15 – 49 years. Perinatal period – starts with fertilization and ends on the seventh day after birth. Perinatal protection consists of preventive, curative and hygienic procedures during preg- nancy, birth and after labor. The measures are directed towards keeping the health of the preg- nant woman, unobstructed development of the fetus and giving birth to a live and healthy baby. Antenatal protection is a sum of measures to protect the health of the pregnant woman and the proper development of the fetus. Postpartal/postnatal protection is a sum of measures to protect the mother and the baby. It’s provided through the patronage service, a control gynecological examination at the chosen gynecologist 6 weeks after birth and postnatal counselings in the Health-care Offices. Neonatal period is a sum of measures to protect the newborn until it turns one year of age. Health insurance is stated as compulsory and voluntary. Compulsory health insurance is stated for all citizens of the Republic of Macedonia in order to provide health-care services and financial compensations based on comprehensiveness, sol- idarity, equality and effective use of the funds according to this law. Voluntary health insurance is stated to provide health-care services which are not encom- passed with the compulsory health insurance. Health-care card is a form which proves the state of an insured person. It is issued by the Health Insurance Fund. The Ministry of Health prescribes the form for the card, as well as the manner of its filling in and usage (article 37 of the Health Care Law). The World Health Organization has the following definition about a patient: Patients: Patients are users of the health-care services, regardless they are healthy or ill, they are defined as subjects whose health should be protected (health-care protection), practically all humanity (ill or healthy).
129. 129 Health-care protection: this term refers to measures, activities and procedures for protection and improvement of health, environment and the working surroundings, measures, activities and procedures of the health-care institutions to keep and improve the health of the people, to stop and overcome diseases, wounds and other disorders of the health, early detection of diseases and the health conditions, as well as timely and effective treatment and rehabilitation through introducing expert medical measures, activities and procedures30. Preventive protection: Measures and activities for improving the health condition and the quality of health-care protection. 30 http://www.unfpa.mk/userfiles/Strategic%20Assessment%20of%20Policy,%20Quality%20and%20Access%20to%20Contra- ception%20in%20the%20Republic%20of%20Macedonia_Macedonian%20language.pdf
130. 130 Publisher: Association “National Roma Centrum” Address: “Done Bozhinov” 11/5, 1300 Kumanovo Republic of Macedonia E-mail: info@nationalromacentrum.org Website: www.nationalromacentrum.org Phone/fax: ++38931427558 Manger of NRC Ashmet Elezovski Research team Sebihana Skenderovska Slavica Kjurchinska Supporters and partners of the project RHP – OSF, Budapest AHMI – OSF, New York Authors: Sebihana Skenderovska Mimoza Velichkovski Lecturer: Marija Krstevska Technical processing: Dejan Djingarski Print: T.D. Geneks – Kochani Circulation: 300 CIP – Catalog in publication National and university library “St. Kliment Ohridski”, Skopje 364-787.9(=214.58:497.7)(047.31) 614.2:618.2(=214.58:497.7)(047.31) SKENDEROVSKA, Sebihana Report from the focus groups in Kumanovo, Shtip, Kriva Palanka, Kochani, Bitola and interviews with institutions: April – October 2011/ Sebihana Skenderovska, Slavica Kjurchinska, Mimoza Velichkovska. – Kumanovo: National Roma Centrum – NRC, 2012. -134 p.; 21 cm. Footnotes to the text ISBN 978-608-65025-2-2 1. Kjurchinska, Slavica [author] 2. Velichkovska, Mimoza [author] a) Romani women – Reproductive health – Macedonia – researches b) Romani women – Health-care protection – Macedonia – researches COBISS.MK-ID 90158090 All rights reserved. No part of this publication may be used for reproduction, copying or publication in any form or by any means in the electronic or printed media without prior written permission from the publisher.
132. National roma centrum str. “Done Bozinov” 11/5 1300 Kumanovo phone/fax: ++389 31 427 558 e-mail: info@nationalromacentrum.org www.nationalromacentrum.org