PRIMARY CARE AND ROMA PATIENTS

1. PRIMARY CARE AND ROMA PATIENTS Graz, 16th September 2011 Danica Rotar Pavlic, MD, PhD

2. European Forum for Primary Care • Since 2005 the European Forum for Primary Care (EFPC) developed as a network with the intention to strengthen Primary Care in Europe. • Over the years it published a series of Position Papers, including the approach by Primary Care of specific diseases and system and functional characteristics of Primary Care. • EFPC now intends to study how Primary Care can best offer care to Roma patients. • A specific working party of the EFPC is going to be be set up in 2011.

3. Distribution of the Romani people in Europe (2007 Council of Europe "average estimates", totalling 9.8 million)

4. Historical background Romany was in fact a sanskrit dialect that originated in the Indus Valley in Northern India in the ninth century. It is thought that a tribe of people left there and travelled through Persia to reach Eastern Europe about 1000 years ago

5. Historical background Initially they were welcomedwhen they claimed the pope’s protection as pilgrims. ¸ However, stigma and lowered tolerance to diversity associated with the religious wars that followed Reformation and the development of nationalstates in the sixteenth century eventually led to their persecution.

6. Historical background • During theeighteenth century, Austria-Hungary legislated that Roma children overfive should be taken away from their parents and raised in non-Romafamilies.

7. Historical background • Genocide during the 2nd World War, has left its marks on Roma identity and psychology. • It has led to relative isolation and to indifference towards or enmity/resistance to the norms of the gadje– the non-Roma population. • Tis feature is important in health care. • Romani children at Auschwitz who were part of various medical experiments. • United States Holocaust Memorial Museum

8. Roma were known as healers • As early as the Middle Ages, the Roma were known as healers. Miraculous powers were attributed to Roma women: it was said they could heal men and animals, and that they were searching for medicine for this life and the next. There is little data on measures taken by the Roma upon the occurrence of a particular medical problem, such as fever.

9. Roma decade of inclusion • Currently we live in the "Roma decade of inclusion", from 2005 to 2015. • In that context several health studies and projects have been undertaken. • The EU has funded and is still funding projects for integration of Roma, of which health is a component.

10. How are Roma people taking self-care after first signs of illness? • Qualitative study in Slovenia

11. Field work • A total of 136 Roma individuals participated. • The data were obtained by a semi-structured questionnaire in Slovenian. • If the interviewee did not understand the question, we used Romani dialect expressions to explain it. • The following socio-demographic data were gathered: sex, age, living environment (water and electricity supply, use of radio and television), education, employment.

12. Field work • The Roma were interviewed in the field with the assistance of a general practitioner (VL) working in their community. • Prior to the fieldwork, VL obtained access permission from the leader of the Roma community – the “king”. VL took notes on interviews by hand and showed her notes to the interviewees at the end. She also tape recorded the interviews.

13. Examples of questions • What does it mean to be healthy? • What is the first thing you do when you feel sick and tired, when you sweat and have a headache? • You have noticed that you were very hot and sweaty. Would you to take your temperature with a thermometer? • What are the measures for feeling better? • When do you feel, that you are healthy again?

14. Results • 136 Roma from Kočevje and the vicinity were interviewed. • 88 women and 48 men from 15 to 65 years.

15. Interviewees by education level • The majority of the Roma interviewed had not finished elementary school; only one percent had finished vocational school. 43 % did not enter the school at all and 21 % finished two years of elementary school.

16. Socio-economiccharacteristics • 83% of the Roma interviewees were unemployed, 15% were employed, and 2% were occasionally employed. • 73% of the interviewees were married or living in a non-marital partnership, 18% were widowed, and 9% were single. • All of the women were unemployed, and the majority of men worked as manual laborers. • 62% of the Roma interviewees received welfare.

17. Structure of the Roma interviewees by housing condition • They mostly lived in wooden one-room shanties constructed from scrap wood and tin. 79% of the Roma interviewees had access to drinking water; 76% of residences had electricity and 64% had a TV set and a radio.

18. Being healthy means Comments (transcripts) Wellbeing That I eat and sleep well. I’m healthy when I feel good and happy. Breathing I’m healthy when I can breathe. Being healthy means I can smoke and not cough. Pain I’m healthy when nothing hurts. It means my back doesn’t hurt. I’m healthy when I can get out of bed. I’m healthy when my stomach doesn’t hurt. That I don’t feel pain in my heart. Sensation It means that I’m not shaking. When I don’t feel tingling over the left side of my body. Being healthy

19. Self-reported first signs of illness and activities to overcome health problems • 28% of the Roma knew the normal body temperature is less than 37 °C. • 52% of the Roma interviewees said they do not own a thermometer; • 15% do own one, but fail to take their temperature when it is elevated and they are sweating; • 33% of the Roma take their temperature when it is elevated and they are sweating.

20. “First I make various teas. If my temperature doesn’t drop for more than three days, I see a doctor.” (ŠŠ, male, 49) “I use sage and chamomile. I drink linden tea. If I get a fever, I put on cold compresses.” (F, female, 41) “I drink tea and rub my chest with ointments. Fever can be cured with potatoes you put on your legs, so the temperature drops. I grate potatoes and put them around my feet. Or I put on cold cloths. If nothing helps, I go to the doctor. But potatoes help. That’s what my mom told me, and what her mom told her.” (BD, female, 35) “What can I say . . . those chemicals and everything, and the cars – you just can’t collect them anymore.”

21. Aspirin, paracetamol, herbs, compreses • 58% of the Roma interviewees were aware of the benefits of aspirin (acetylsalicylic acid) and paracetamol • 24% still opt for cold compresses for a high fever, and 18% choose herbs. • Talking to the Roma and observing them in the field revealed that the young Roma girls pick healing herbs, but do not know what to use them for. • The older Roma women know the healing properties of herbs but prefer to send seriously ill Roma to a physician.

22. Discussion • In terms of research on Roma health, what approach would best lead to improvement of health care for Roma and of their health status?

23. Discussion • Introduction of the health mediator might be an effective way for improvement of health status of Roma. • Still, there are questions around the best profile and training of the health mediator, their professional status.

24. Discussion • Involvement of Roma in plans and strategies. • Activities are many times prepared by “professionals” who do not live close to Roma.

25. Conclusions • The Roma are an important ethnic minority in Eastern and Central Europe. This study includes Roma from the southern Slovenian town of Kočevje and the vicinity. • The results show that the unemployment in this community might be an important issue because all of the Roma women interviewed were in fact unemployed.

26. Conclusions • Roma generally do not use a thermometer, but instead define health or illness according to their general well-being. • However, more than half were aware of the benefits of antipyretics. Some of the Roma interviewees first attempt to treat fever with the help of traditional folk medicine (teas, compresses). • They usuallysee the doctor if their health problems last more than 3 days.

27. The agenda for the European Forum for Primary Care • Documentation on Roma health is available by now but not yet in a format that is useful for primary care practitioners – in most countries. Development of information material and training of practitioners in a Roma sensitive approach to health services provision might be considered. • What should be the agenda for further studies and research on Roma health? The EFPC may contribute to defining that agenda and its members may support its implementation.

28. The Future of Primary Health Care in Europe IV Welcome to Gothenburg, Sweden September 3-4, 2012

29. Website: www.euprimarycare.org Tel: +31 30 272 96 11 E-mail: info@euprimarycare.org