Table Of ContentUNIVERSIDAD AUTÓNOMA DE GUERRERO
CENTRO DE INVESTIGACIÓN DE ENFERMEDADES TROPICALES
MACEDONIAN AND KOSOVAN ROMÁ LIVING
IN “NOMAD CAMPS” IN ITALY:
HEALTH AND LIVING CONDITIONS OF CHILDREN
FROM BIRTH TO FIVE YEARS OF AGE
TÉSIS
QUE PARA OBTENER EL GRADO DE
DOCTOR EN EPIDEMIOLOGÍA
PRESENTA:
LORENZO MONASTA
ACAPULCO, GUERRERO, 26 DE OCTUBRE DE 2005
ABSTRACT
Epidemiologic research involving marginalized populations in urbanized societies faces two
special challenges: the populations themselves often live in relatively small, widely dispersed
groups and their conditions and needs are generally defined by outsiders – often inaccurately.
In Italy, more than 18,000 foreign Rom who migrated from Eastern European countries live
segregated in “nomads’ camps”, in unstable conditions. A sample of five camps of Kosovan
and Macedonian Romá was selected, containing 137 families with 167 children under five
years of age. The research focussed on the residents’ own priority: the health of their children
and how it is affected by living conditions in the camps.
Confirming the concerns of the Rom parents, the study revealed a prevalence of asthma higher
than documented in Italian children, high occurrences of diarrhoea and bronchitis and a high
percentage of low birthweight babies. The results showed evidence of environmental factors
affecting children’s health, often made worse by long periods the families spent living in the
camps. Factors significantly associated with asthma, diarrhoea and bronchitis were:
overcrowding of houses and camps, presence of rats, presence of stagnant water, structural
conditions of the house, difficult access to toilet services, use of wood stoves and presence of
industrial sites in the vicinity.
With no external funding available and despite its small numerical base, this thesis
demonstrates that quantitative research among minorities dispersed in small groups is capable
of providing reliable evidence that communities themselves can use to advocate for change –
provided the design is based on the communities’ own priorities.
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SINODALES
Presidente: Dr Robert J Ledogar
Secretario: Dr Anne Cockcroft
Vocal: Dr Nancy Gibson
Vocal: Dr Christina Zarowsky
Vocal: Dr Neil Andersson
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To the prejudice of people I care for,
without which I wouldn’t have trodden this path
“In the modern world, those whom we effectively hate are distant groups (...). We
conceive them abstractly, and deceive ourselves into the belief that acts which are
really embodiments of hatred are done from love of justice or some such lofty
motive. Only a large measure of scepticism can tear away the veils which hide this
truth from us. Having achieved that, we could begin to build a new morality, not
based on envy and restriction, but on the wish for a full life and the realization that
other human beings are a help and not a hindrance when once the madness of envy
has been cured. This is not a Utopian hope (...). It could be realized tomorrow if men
would learn to pursue their own happiness rather than the misery of others. This is no
impossibly austere morality, yet its adoption would turn our earth into a paradise.”
Bertrand Russell
Sceptical Essays
1928
“(…) We should be able to see that cultural differences are superficial phenomena. In
my experience, it is the similarities in man’s many endeavours to control his reality –
not the differences – that are impressive culturally. Each of us needs to act to rectify
the social, economic and attitudinal disparities and prejudices which permeate the
world. Posterity can muse upon whether our progress was made by science or by
seeing.”
Andreas Fuglesang
About understanding
Dag Hammarskjöld Foundation, 1982
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ACKNOWLEDGEMENTS
Firstly, I would like to thank the Romá from the camps covered in this study who accepted my
presence and whom I hope will gain something positive from my work.
In the initial phase of this study, when I had few and unclear ideas, all those who helped me
gave me their invaluable support: Carlotta Saletti, Giulio Taurisano from Turin local council,
Piero Brunello, Sandro Costarelli, Piero Colacicchi of ADM, Pierangelo Bertoli and Radiana
Grigoletto from ETAM in Venice, Rosanna Marcato, Pinuccia Scaramuzzetti from the Gruppo
Ecclesiale tra i Rom e i Sinti in Verona, Tiziana Mori and Nicola Solimano of the Michelucci
Foundation, Giovanna Lodolo, Anna Rota, Monica Rossi, Francesca Naldoni from Doctors
Without Frontiers, Nando Sigona from Com.p.a.re and the members of the Centro Sociale
D.A.M.M. in Naples.
Particular thanks go to those who introduced me and helped me get access to the camps. In
Florence: Demir Mustafa, Rufat Edjevat, Giusy Baffè from Quartiere 4, Piero Colacicchi, the
Amengià Association, the workers from Quartiere 4, Ivan and all the watchmen. In Bergamo:
Cristina Suardi, Anna Carrara, and Massimo Malachini from the Migrantes association. In
Brescia my thanks go to Giovanni Valenti from the Ufficio Stranieri e Nomadi, Luigino
Beltrami, Maria Majorana and Elena Nodalli. Thank-you also to the Assocazione Odar in
Bolzano, and in particular to Silvia Golino and Paola Dispoto. In Mestre/Venice, my thanks
go to Federico Ballarin for his help when he was in charge of the Ufficio Stranieri e Nomadi
and Sara Gomiero, former community worker at the San Giuliano camp. My thanks also
extend to Dr. Maurizio Mauro and Maria Favaro from Venice local council, Vittoria Scarpa
and Gianni Boeto from the Associazione Caracol.
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With reference to bibliographic research, I must thank Paola Trevisan who pointed me in the
right direction and gave me excellent advice and with whom there has been a fruitful
exchange of material, and Beverly Shea for her support in tracing and reaching articles that I
wouldn’t have reached otherwise.
Precious information and readiness to help were offered to me by the staff of the health
services in the cities I visited: Daniela Caselli from the Consultorio Familiare in Quartiere 4
and Paolo Zagli from the Presidio Sanitario “Le Piagge” in Florence; Dr. Lorenzi from the
th
Dipartimento di Prevenzione in Bergamo; Dr. Guizzi from the Consultorio Familiare, 7
health district, in Brescia; Amalia Vettore, health assistant at the Consultorio Familiare of via
San Marco in Mestre.
I would have been at a loss without the generosity of Daniele Todesco and his family who, by
lending me their camper van, enabled me to go and live at the Poderaccio camp for a month.
The support of Alessandra Monasta was also invaluable in that she allowed me to take
occasional warm baths to offset the freezing morning showers I took during the biting cold in
that period.
My thanks go to Burhan Hasani for his friendship, for the work we carried out together and
for all the things he has taught me.
Thank-you to my parents for having supported me, for their comments and the discussions
which helped to think more clearly on issues that are not always easy to grasp.
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I would like to thank my supervisors: Dr. Anne Cockcroft for her precious comments and
Prof. Leonardo Piasere who guided me by supplying materials and advice without which I
would not have gone very far. The opportunity to be part of the research group coordinated by
Prof. Piasere has been of great value and thus I would like to extend my thanks especially to
Michele Barontini, Stefania Pontrandolfo, Carlotta Saletti, Simona Sidoti, Elisabeth Tauber
and Paola Trevisan. To the Director of the doctoral programme, Robert J. Ledogar, the
Director of CIET, Neil Andersson, and to Dr. Christine Zarowsky and Dr. Nancy Gibson
thanks for their useful comments in the final phase of this journey.
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TABLE OF CONTENTS
Abstract ............................................................................................................................................................... 2
Sinodales ............................................................................................................................................................. 3
ACKNOWLEDGEMENTS.................................................................................................................................. 5
TABLE OF CONTENTS...................................................................................................................................... 8
LIST OF TABLES AND FIGURES.................................................................................................................. 11
DEFINITIONS AND ABBREVIATIONS ........................................................................................................ 14
SUMMARY ......................................................................................................................................................... 18
1. INTRODUCTION........................................................................................................................................... 26
Context, background information ..................................................................................................................... 28
The debate about the “Rom camps” in Italy .................................................................................................. 29
Objectives ......................................................................................................................................................... 36
General Objective ......................................................................................................................................... 36
Specific Objectives ....................................................................................................................................... 36
2. LITERATURE REVIEW............................................................................................................................... 37
Critical review of the literature on the health of “Gypsies” .............................................................................. 37
Content Analysis ........................................................................................................................................... 39
The Gypsy “race”...................................................................................................................................... 42
The origin of the Gypsies.......................................................................................................................... 43
Studies on Gypsy health............................................................................................................................ 45
Genetics and the health of Gypsies ........................................................................................................... 46
Congenital malformations among Gypsies ............................................................................................... 49
Preventive health care among Gypsies...................................................................................................... 51
Health problems among Gypsies in relation to living conditions and lifestyle ......................................... 53
Anthropology and health of Gypsies......................................................................................................... 56
The health of children ............................................................................................................................... 58
Conclusions................................................................................................................................................... 65
Marginal communities, environment, housing and health ................................................................................ 67
Community priorities as a formal element of research design .......................................................................... 72
Community Based Participatory Research (CBPR) ...................................................................................... 72
Time .......................................................................................................................................................... 74
The reserved nature of Rom communities – Building trust....................................................................... 75
Mixed methods, triangulation and contextualization ................................................................................ 76
Funds......................................................................................................................................................... 78
Final considerations .................................................................................................................................. 79
CIET methods ............................................................................................................................................... 80
3. METHODOLOGY, RESEARCH INSTRUMENTS AND ETHICAL CONSIDERATIONS ................. 85
Defining the methods, in the context of Rom camps in Italy ............................................................................ 85
Choosing the research topic .............................................................................................................................. 87
Selection of camps ............................................................................................................................................ 88
A month spent at the Poderaccio camp ............................................................................................................ 90
In the other camps ............................................................................................................................................. 93
The research instruments................................................................................................................................... 94
The questionnaire.......................................................................................................................................... 95
The interviews........................................................................................................................................... 95
Direct observation during the household survey ....................................................................................... 96
Free and informed consent and confidentiality ......................................................................................... 97
The focus groups........................................................................................................................................... 97
Description of meetings ............................................................................................................................ 98
Free and informed consent and confidentiality in the focus groups.......................................................... 99
The protocol for direct observation............................................................................................................... 99
Interviews with the Health Services............................................................................................................ 100
The timing of the fieldwork ............................................................................................................................ 102
Analysis tools.................................................................................................................................................. 102
Small sample measures of association and confidence intervals................................................................. 103
Asymptotic estimates .............................................................................................................................. 103
Exact Fisher test p-value ......................................................................................................................... 105
Introduction to the exact confidence limits ............................................................................................. 106
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Exact conditional tail method (approximate) .......................................................................................... 106
Exact conditional simultaneous method.................................................................................................. 108
Exact confidence limits by Metha, Patel and Gray ................................................................................. 109
MLE – Maximum Likelihood Estimates, conditional and unconditional ............................................... 109
Application to actual data........................................................................................................................ 111
Choices made for the analysis..................................................................................................................... 113
Feedback to the communities, institutions and associations ........................................................................... 115
Response to immediate individual needs of interviewed families .................................................................. 115
4. HISTORY OF THE COMMUNITIES AND OF THE SELECTED CAMPS......................................... 116
The Romá of the Poderaccio camp in Florence .............................................................................................. 116
The Romá of Via Rovelli in Bergamo ............................................................................................................. 118
The Romá of the farmhouse of Via Chiappa, Brescia..................................................................................... 120
The Romá of the San Giuliano camp in Mestre (Venice) ............................................................................... 122
The Romá of the Castel Firmiano camp in Bolzano....................................................................................... 123
5. RESULTS ...................................................................................................................................................... 126
Direct observation ........................................................................................................................................... 126
Population of the five camps....................................................................................................................... 126
Observations in the Poderaccio camp in Florence...................................................................................... 127
Observations in the camp in Via Rovelli, Bergamo..................................................................................... 128
Observations in the farmhouse in Via Chiappa, Brescia............................................................................. 129
Observations in the San Giuliano camp, Mestre (Venice) .......................................................................... 129
Observations in the Castel Firmiano camp in Bolzano............................................................................... 130
Comparative observations........................................................................................................................... 132
Access to bathroom facilities and electricity supply ............................................................................... 134
Interviews with Health Services.................................................................................................................. 138
Florence health services .......................................................................................................................... 138
Bergamo health services ......................................................................................................................... 139
Brescia health services ............................................................................................................................ 142
Mestre health services ............................................................................................................................. 145
Results of the household survey...................................................................................................................... 147
Types of housing and overcrowding ........................................................................................................... 148
Access to water and bathroom facilities...................................................................................................... 151
Electricity supply, fridge and heating system used in the house ................................................................. 151
How and where cooking was carried out .................................................................................................... 152
Demographics ............................................................................................................................................. 153
Characteristics of the interviewees.............................................................................................................. 154
Age of the mothers .................................................................................................................................. 155
Number of years spent living at the camp................................................................................................... 156
Degree of literacy of the interviewees......................................................................................................... 157
Literacy amongst the mothers ................................................................................................................. 157
The smoking of cigarettes ........................................................................................................................... 159
Children from birth to five years of age: general information .................................................................... 160
Birthweight of the children in the study...................................................................................................... 161
The perception of the growth of the child by the interviewees ............................................................... 163
Symptoms of the children ........................................................................................................................... 164
Diarrhoea symptoms ............................................................................................................................... 165
Factors related to diarrhoea..................................................................................................................... 165
Coughing................................................................................................................................................. 167
Factors related to coughing ..................................................................................................................... 168
Breathing difficulties and asthma............................................................................................................ 170
Reported diagnosis of breathing problems.............................................................................................. 173
Dermatological diseases.......................................................................................................................... 176
Other pathologies ........................................................................................................................................ 178
About fever ............................................................................................................................................. 178
Composite analysis of all reported symptoms............................................................................................. 179
Children taken for medical examination and symptoms exhibited ............................................................. 181
Children taken for medical examination in case of diarrhoea ................................................................. 181
Children taken for medical treatment in case of coughing...................................................................... 183
Children with fever taken for medical examination ................................................................................ 184
Children taken for medical examination in case of general sickness ...................................................... 185
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Why children fall ill: the opinion of the interviewees................................................................................. 186
Results of meetings with focus groups............................................................................................................ 188
6. DISCUSSION OF RESULTS....................................................................................................................... 196
Characteristics and limits of the study ............................................................................................................ 196
Generating evidence from communities’ own priorities ................................................................................. 199
The role of contextualization ...................................................................................................................... 199
From community priorities to epidemiological evidence............................................................................ 200
Demographics and mortality ........................................................................................................................... 202
Frequency of health problems suffered by children........................................................................................ 204
Low birthweight.......................................................................................................................................... 205
Diarrhoea..................................................................................................................................................... 205
Coughing..................................................................................................................................................... 209
Breathing difficulties and asthma................................................................................................................ 210
Other symptoms and pathologies ................................................................................................................ 213
Environmental factors, habits and behaviours affecting children’s health...................................................... 214
The camps’ environment............................................................................................................................. 215
Overcrowding.............................................................................................................................................. 217
Length of family residence in camps .......................................................................................................... 218
The perception of the residents of the camps .............................................................................................. 219
Relationships between environmental factors, habits and behaviours, and child health ................................. 222
Low birthweight.......................................................................................................................................... 222
Diarrhoea..................................................................................................................................................... 223
Coughing..................................................................................................................................................... 224
Breathing difficulties and asthma................................................................................................................ 225
Camp residents’ access to and use of health services related to child health .................................................. 226
Concerns, epidemiologic results and possible actions .................................................................................... 228
7. SOCIALIZING THE RESULTS AND THE EXPERIENCE ................................................................... 230
Involving the Rom organizations .................................................................................................................... 232
The researchers and the health services .......................................................................................................... 233
Involving the local and national institutions ................................................................................................... 236
8. CONCLUSIONS ........................................................................................................................................... 238
Special treatment............................................................................................................................................. 239
Regarding health and cultural policies ............................................................................................................ 241
Responsibility and planning............................................................................................................................ 243
The costs and the consequences ...................................................................................................................... 245
Perceptions and the resources of the inhabitants of the camps........................................................................ 246
TABLES............................................................................................................................................................. 248
FIGURES........................................................................................................................................................... 286
REFERENCES.................................................................................................................................................. 295
ANNEX 1. NOTES ON THE MAPPING OF NON-ITALIAN ROM SETTLEMENTS IN ITALY ......... 310
The main migratory flows and numbers reported by other authors ................................................................ 311
Data derived from the mapping exercise......................................................................................................... 313
Settlements and Regions ............................................................................................................................. 313
Place of origin ............................................................................................................................................. 314
ANNEX 2. THE CIET METHODOLOGY .................................................................................................... 321
ANNEX 3. THE AOC TABLE......................................................................................................................... 322
ANNEX 4. RESEARCH INSTRUMENTS ..................................................................................................... 324
Questionnaire for mothers or carers of children of 5 years or less.................................................................. 324
Focus Group for mothers of five years old children or younger ..................................................................... 325
Direct observation: Living conditions at the camp ......................................................................................... 326
ANNEX 5. EXAMPLES OF SMALL SAMPLE MEASURES OF ASSOCIATION AND CONFIDENCE
INTERVALS ..................................................................................................................................................... 327
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