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OBJECTIVES AND RESEARCH QUESTIONS
THE ITALIAN FAMILY
THE FAMILIES IN THE RESEARCH
Partecipants in this study
RESEARCH DESIGN AND METHODS
Study setting and sample
Data collection techniques
HIV infection and AIDS in Italy
THE SERVICES AND THE LAW
THE NEW THERAPIES (HAART)
INTRAVENOUS DRUG USE
THE SOCIAL REPRESENTATION OF AIDS
THE MEDICAL DISCOURSE
LIVING WITH HIV
THE FAMILY AS A GROUP OF INDIVIDUALS
THE THERAPIES AND THE FUTURE
Taking the therapies
Care giving and time
CONCLUSIONS AND DISCUSSION
Appendix 1: Informants' socio-demographic data
Appendix 2: Interview Guidelines
Appendix 3: List of abbreviations
Appendix 4: Problem of Analysis Diagram
NOTE [This online version does NOT include the entire thesis. You can contact me if you're interested in the hardcopy.]
The Human Immunodeficiency Virus (HIV) infection is spreading around the world
and its occurrence is having a strong impact on our times. An interesting aspect of
the epidemic is the variety of issues that are related to it: not only at a biological and
medical level, but and foremost at a social and cultural level.
Many disciplines have been involved in the quest for understanding and modifying the history of the epidemic: biology, immunology, virology and medicine have been focusing on the interactions between the virus and the human body. Social sciences, including anthropology, have been concentrating their efforts in understanding and trying to modify human behaviours and the interactions between human beings and their environment, which play a role in the development of the epidemic. This widespread interest in HIV infection is not only due to the global proportion of the epidemic, but also to the all-encompassing characters of it: biomedical, economic and socio-cultural factors are at stake.
All these factors come together and shape the image of Acquired ImmunoDeficiency Syndrome (AIDS) and the life of people living with HIV infection. People living with HIV/AIDS (PWHA) and those sharing their life are central characters in the history of the epidemic. PWHA and their families have to bear the burden of stigmatisation, distress, illness and the economic and social costs of this condition. They have to adjust to a new, difficult situation and find mechanisms to cope with it. The strong medicalisation and the cultural construction of HIV infection had determined a degree of neglect of this aspect in the discourse on HIV management. Family care and management of PWHA is embedded in a web of meanings that is worthwhile to understand in depth.
My own involvement in the history of the epidemic in Italy started in 1988, first by participating in an epidemiological study, and then while I was working as a medical doctor in a centre for HIV/AIDS care and research. At that time, I was involved in clinical management and home care of people with HIV infection. The epidemic was at its peak with respect to the number of symptomatic cases, demand for health services and social consequences. Later, either as promoter of awareness and universal precautions to health workers or as responsible for a prevention program in different target populations, I had the opportunity to come across many different perspectives on the infection and the disease. These different experiences stimulated my interest in focusing on HIV/AIDS for the final research of my medical anthropology training.
One of the liveliest memories of my work with PWHA is the human experience of uncertainty, fear, suffering, tension and love I observed in the families accompanying members infected with HIV. My interest in the subject is supported also by the growing importance of the care and assistance for people with HIV infection provided by family and other informal caregivers. Their participation in care is basic not only for the well being of the sufferer, but also for the health services, relived from part of the assistance, in terms of costs and constrains. Nevertheless, their arduous efforts are often neglected in the statistics about AIDS care.
General objectives :
To describe the factors at stake in the response of the family to HIV/AIDS, when one member is infected, with special attention to the perspective of the caregivers. To describe the changes in the familial interactions after the introduction of the new antiretroviral therapies (or HAART, Highly Active Antiretroviral Therapy).
Specific objectives :
1) To analyse the individual characteristics of caregivers and care recipients which have a role in shaping the care-giving interaction 2) To describe the economic, cultural and social factors which influence the familial interactions when a HIV positive member is present 3) To describe the changes in the perception of HIV infection and in the behaviour toward the infected member of the family, after the introduction of the new combination therapies 4) To analyse the role played by the Italian family structure and organisation in the management of HIV infection
With these objectives and questions in mind, I went to the field. With this thesis, concluding one year of studies in Medical Anthropology, I will share my experience and present my findings. To start I will introduce the people who have been informing my work to lead the reader into the world I wanted to explore. I will present the research design and the applied methods to explain the procedures I used and the constrains I found during my work. After that, I will give a description of the context in which the stories take place and present the themes that have emerged in the talks with the informants. Finally, I will draw some conclusions that can be used for further research and for practical application.
In this chapter, I will present the families which constitute the study population. After a short introduction on the Italian family and its role in health, I will present the salient points in the narrative of the HIV positive subjects. By describing their views on family interactions and on illness experience I want to give a general picture of the family context before discussing the response to HIV infection. I will describe each family also for what concerns structure, composition and organisation, with a brief explanation on the living arrangement and socio- economic conditions. Finally, I will introduce the members of the family, with special attention to those I managed to interview.
The Italian family, with unique and homogeneous characteristics, has never existed: there have been various typologies along time, space and social clusters. Many sociologists now agree that past theory about the change from the 'traditional' to the 'modern' family structure is wrong. In this theory, industrialisation constitutes the turning point for the shift from the complex structure of the 'traditional' family, extended or multiple, to the nuclear family. Data on the history of the family in northern-central Italy do show a change in family structure with industrialisation, which gave a strong impulse to the formation of neolocal conjugal families. However, the historical perspective showed that a unilinear change towards nuclearisation does not exist. In Italy, a series of oscillations with different grades of complexity, depending on economic variables have characterised the family structure. It is worth noting the change in family relations, independently from its structure: from the patriarchal, where the roles are strictly defined by sex and age, with strongly asymmetrical power relation to the intimate conjugal, more flexible in roles and power distribution (Barbagli 1984, 474). Even if Italy has been peculiar in respect to other European countries for the higher proportion of extended and multiple families, nowadays the majority of the families have a nuclear structure. Parents and children, in decreasing number, due to a very low fertility rate (1.2 in 1990-1995 [UNAIDS/WHO Fact Sheet 1999]), live together in neolocal arrangements. As reported in Pitkin's (1985) ethnography, the Italian family ideology centres on the verb sistemare, the primary goal in life of any married couple. "Implicit in that imperative is the recognition that the best and most worthwhile things in life are to be realised only through the formation of a family" (p. 209). This ideology supports the well known familism of Italian society, based on mutuality, where tolerance for dependency and family collaboration are normal experience of family life. Even after the changes of modernisation, the idea of support due to members of the kin group is very much alive, "in a manner that maximises the advantages of autonomy and interdependence" (p. 224).
From a sociological point of view, other factors related to the structure of Italian society should be considered. The consumerist economy determined the need for increasing the total income of the family. This stimulated the participation of women in the job market. In addiction, women still bear the responsibility for the household: domestic chores and care for the well being of family members are among the basic tasks of the wife-mother in the family. In the Italian family the role of the mamma, mother-wife is prominent, and we can expect her to take over the main role in the care-giving activities. When the role of caregiver is added to the already demanding other tasks, women can experience conflict between the different roles. This conflict can become the basis of feelings of stress and burden (Mui et al 1998), as we will see in the case of some informants.
Litman (1974) has elaborately described the role of the family as a basic unit in health and medical care. He reviewed the interrelation between health and family and advocated for an approach that "examines not only the interactions of family members, but the totality of familial transactions within the context of historical time". In his review, the author revised the influence of the family not only on the use of medical services, but also on the development, interpretation and management of the illness episodes. The family has the first say in recognising the sick role and puts in movement the 'lay referral network', which depends on social- demographic characteristics, family size and moment in the life cycle.
THE FAMILIES IN THE RESEARCH
The principal demographic and social characteristics of the informants are summarised in the tables in Appendix 1.
[This online version does NOT have the appendices. Please contact me if you're interested in the hardcopy.]
I began to involve myself with the AIDS epidemic in 1988 and I stopped working
as a clinical assistant in an HIV service five years ago. At that time, the new
therapies were only being used in limited clinical trials for their registration in Italy.
Thus, I could not directly witness the changes brought about by the introduction of
the HAART. I was very curious then to know what was going on in the lives of
people living with HIV and taking the new drugs. In addition, my previous
experiences in home-care had left me with strong memories about family care
giving. These personal motivations were the heart of the choice of the topic of this
To make the work even more interesting was the fact that the information resulting from it could be useful also for other people. While talking to people involved in the daily history of HIV infection, I realised that the perception of the infection was changing and new issues were emerging as HIV infection was a less severe condition. A shift in perspective was taking place, not only for the HIV positive subjects, but also for the people taking care of them.
After a year of anthropological studies in which I realised how far reaching the cultural and social aspects of medicine were, I was expecting that the changes, occurring in AIDS epidemic, would also entail a change in meanings, expectations, perspectives, human relations and possibly collective construction of the disease. To look at the emerging issues from the perspective of PWHA, with particular attention to their caregivers, it would have given the opportunity to realise what they were experiencing and eventually to recognise unmet needs and perspectives for the future.
I planned to disseminate the report of my research to the people who have been involved directly or indirectly in it, hoping that it can constitute the basis for further discussion. The staff of the Infective Disease Department, which I contacted for the recruitment of the informants, seemed interested in the topic. They suggested me that a big change was going on and welcomed the idea of an anthropological research. I also contacted some people working in a NGO for assistance and solidarity with PWHA. They anticipated that my work might be disseminated through their journal, where it can become the starting point for further considerations on some aspects of family life.
Finally, from my point of view, to go back to a subject that I have known from a medical perspective and to look at it through the anthropological 'gaze', was a unique occasion to exercise newly learned skills and to practise a new point of view. I propose all these as justification for this research and for the possible inconveniences that I gave to those I involved.
Study type Due to my previous experiences in the field of AIDS I had some basic knowledge about the context in which PWHA were living, at least for what concerned medical problems, social needs and fear of stigmatisation. The unit of analysis in my research is the family and the changes brought about by the combination therapy in family interactions. This was a totally new subject for me, so I decided on a qualitative, descriptive study, aimed at giving a comprehensive picture of attitudes and practices involved in living with HIV in the family. The cognitive character of the research questions and the complexity of the themes under study justify the qualitative approach.
At the onset, I had some assumptions about the subject of my research:
1) from the literature and my experience, I was convinced that PWHA were living in families, mostly with parents. An Italian study (Marazzi 1994) found that 55% of PWHA living at home were staying with their parents, less with siblings, friends or spouses. In reality, as soon as I started to look for families of HIV positive subjects living with their parents, I realised that this was not the most common arrangement anymore. The increase in mean age of PWHA and the better health status implied that many PWHA were now living alone or in couples, sometimes with their own children. I decided then to look for informants that define themselves as living in family, independently from the family structure. I only excluded homosexual couples, because of the limited frequency of homosexuals in the AIDS scenario in Italy and because, in general, this group has been already the subject of many studies.
2) The second assumption was about the effects of the distribution of the new therapies. In Italy, antiviral regimens with a two-drug combination were available from the end of 1995. The more recent Protease Inhibitors have been licensed in Italy since the beginning of 1996, and the combination therapy, best known as HAART, was available for all the patients during the second quarter of 1997. Since then, changes in survival among people with AIDS have been reported through experimental and observational studies (Porta 1999). The history of the epidemic has been changing and many changes are still underway. The HIV positive individuals are now facing a new stage in the epidemic, in which the disease becomes chronic, with a much lower probability of progression to the final stages. The family has to go through a readjustment: it is no more a question of accompanying a dying person to his/her last period of life. Now the question is to support in dealing with the effects of the therapy, with the possible return to work (Brooks et al. 1999), with the disclosure of a lasting condition, still stigmatised in the community.
Study setting and sample
The fieldwork took place in Milan, the regional capital of Lombardia, the second
largest city in Italy, where I have been living for thirty years and where high
prevalence of HIV infection is reported. The data collection started in June 2000
and was concluded in the first week of July 2000.
The research focused on the family response to HIV infection; therefore, the study population consisted of families in which a member is infected with HIV. My working definition of the family, as previously described, became more flexible after the beginning of the fieldwork: the family was whatever was defined as such by the HIV positive subject, whom I will call the index case. In fact, I talked with people with very different kinds of familiar organisation.
Following the assumption that the introduction of the HAART is changing the
response to the epidemic, only people infected with the HIV virus, living with their
family, who have been on antiretroviral therapy for at least six months were
Another necessary characteristic was that the family was aware of the HIV status of the index case. My interest was in attitudes and practices of the family, especially of those who have to deal with 'joys and sorrows' of PWHA daily. Therefore, they had to be aware of HIV infection. This condition complicated the recruitment, because many of the PWHA living with parents did not disclose their status to the family.
The informants were contacted through an Infectious Diseases Department, Centro San Luigi, a special unit for care and research on HIV infection and correlated syndromes. This Department is part of a very big, private hospital, which is operating within the National Health Service (NHS). PWHA attending this clinic are assigned to a medical doctor, who becomes the reference for the medical management. The access to this centre is free for whoever wants it and presents the request of the personal General Practitioner from the National Health Service. People attending the centre come from different sectors of the society.
I asked the doctors working there to pick out among their patients, subjects with the
characteristics I was looking for and to ask them if they were willing to participate
in the study. Once they gave their permission, I contacted them directly by
telephone to arrange the appointment for the interview. Nobody refused to
participate, but I had some difficulties in setting the appointments due to the full
schedule of some of the informants.
Thus, I made a convenient sampling from a closed cohort, those attending this Department, whom I considered quite representative of the HIV positive population. I contacted and interviewed seven families, with different structure and organisation, as described in the previous chapter.
Data collection techniques
I collected the data mainly through in-depth interviews, using a semi-structured
open-ended list of questions (see Appendix 2). The interviews were taped and
transcribed in the original language: Italian.
I had to arrange the interviews in different locations: I met some of the PWHA in the Clinic, some at their home and some in mine: I left the choice of the place up to them. I interviewed the other members of the families in their own home; this gave me the opportunity to observe the living conditions, the arrangement of the space in the house and other characteristics of the family management.
I tried to interview the positive subjects first and then the other members of the family. I collected the life histories of PWHA. Through the reconstruction of significant moments in their lives, I could access the themes that are significant to them. I tried to focus on "what the personal narrative can reveal about the culturally specific processes having an impact on their life" (Pamphilon 1999).
Each other member of the family was interviewed separately, except in one case, which I greatly regret, as I realised that the conversation was not totally free. This strategy gave me the possibility to apply some triangulation of sources, as the same stories where reported by different members of the family.
In the initial work plan, I scheduled a Focus Group Discussion with the caregivers. After the first contacts with the families I gave up the plan, due to time constrains of the informants and to the sensitiveness of the topics.
In addition, I contacted and interviewed four key informants, chosen in order to have a more general overview of family perspectives, services available and medical care for PWHA and the changing history of the AIDS epidemic. The main key informant was Dr. Massimo Cernuschi, who has been working in infectious disease since 1983. He has been through the entire history of the AIDS epidemic. His work is mainly clinical, with activities in the in- and outpatients departments. Massimo is also an activist, working in an NGO founded by HIV positive people, named ASA (Associazione Solidarietá AIDS=Association for Solidarity against AIDS) and based in Milan. This NGO offers counselling, home-care and self-help groups for HIV positive people and their families. They organise prevention programs for the general population and many other activities to socialise the problems of infected people and to create solidarity toward them. Massimo was my colleague for 4 years, when I was working in the same hospital and in the home care group in ASA. His key role is due to his long experience in AIDS. As a doctor and as a friend of many HIV positive people, he has a realistic and 'experience- near' attitude towards the epidemic, joining professional knowledge and human understanding.
Another key informant was Marianne, whom I met in ASA. She does some
voluntary work there and is the mother of an HIV positive homosexual man. She
represents the subjects I was interested in and she 'went public'; therefore, she is
involved in raising awareness on HIV infection. Her position in the NGO and in the
society made her a perfect informant for discussing the issues on family
The third informant was Dr. Silvia Nozza, who works in Centro San Luigi as well. She is a young doctor. For two years she has followed the Ambulatorio Prime Visite, the service where people who want to be followed in the HIV clinic attend their first visit. Therefore, Dr. Nozza is the first contact for people coming from other centres or those who have recently discovered to be HIV positive. I was interested in the perception of the infection in those who acquired the virus recently, in the era of HAART. Moreover, I wanted to know what kind of message and information these people were receiving from the health services.
Finally, I visited a home for HIV positive mothers and their children, created and managed by an NGO with subside from the public administration. Three years ago Arché (the name of the NGO) opened a house where HIV positive mothers with children could find a place to stay and someone who helps them in responding to HIV infection and other social problems. I talked to the person responsible for this place. There I could find some information about people whose 'family project' could not work out and about the problems which women and their children had to face.
The preliminary phase of analysis began during the data collection activities. Life
histories were represented as "trajectories, useful in making sense of the work
performed by patients…. in relation to illness and its consequences" (Castro 1998).
My findings reflect mostly what people told me. I did some observation while visiting the informants at home, but the stories of PWHA, their mothers and partners are the core of the data. Narratives are used very often in anthropological research and passionate debates have been going on about the use of narratives .
All the transcribed interviews with the HIV positive subject were analysed and the emerging themes were presented to the other members of the family to increase the quality of the data.
The interviews were analysed and common themes underlined. During the interviews I heard different versions of the same story, but as Lawless (1996) underpins "narratives are not treated as necessarily true accounts, but nor are they considered to be false in any sense". The narrative representation of one's life and of the HIV infection experience should be interpreted as a reconstruction giving a meaning to the lived experience, 'a rehearsed plot'. In an enlightening article, Kathy Charmaz (1990) proposes to look at chronic illness through a "symbolic interactionist perspective tempered by Marxism and phenomenology". This perspective assumes that what people do depends from the meanings they give to the situation they are in, but these meanings result from social interactions and are constructed following subjective realities (phenomenology) and social structures (Marxism). A constructionist approach "assumes an emergent reality fundamentally shaped by social interaction… and offers flexible means of studying both fluid interactive processes and more stable social structures" (Charmaz 1990). I tried to analyse the data following this perspective.
I present the limitations of the study to explain the possible bias in the discussion of
the findings. Firstly, it was one objective of this study to describe the changes
induced by the introduction of the combination therapy, but it is important to note
that the cross-sectional design of the research is a limitation to this aim. In cross-
sectional studies, the past is reconstructed through the recall of the participants,
therefore is liable to plot making, in which "meaning is made to match the ending"
(Pamphilon 1999). A longitudinal study would have suit better for the description of
Secondly, even if I could not identify any factor limiting the access to the clinic where I recruited my informant, the selection of people attending the same health service may give rise to a selection bias. A larger study, selecting people attending different HIV centres, would have resulted in a more representative population.
During the final work of data analysis, I realised another limitation linked to the study design and to the sample characteristics. The absence of a comparative group hindered the possibility to compare and verify some considerations. While analysing the data, constructing categories and making comparisons I realised that the sample was not complete. The lack of diversified life experiences, like fathers of PWHA, families of PWHA who are not on combination therapy, children of PWHA and PWHA concealing their status to the family, prevent to corroborate my findings.
Ethical considerations Before interviewing, I explained the purpose of my study and asked for informed consent to all the participants. Permission to talk with the other members of the family was previously agreed upon with PWHA. To guarantee maximal confidentiality I concealed real identities and used pseudonyms.
Going to the field as a medical anthropologist was an exciting experience. Due to my 'sticky' medical background and the lack in experience in anthropological research, the fieldwork and the data analysis turned out to be also a difficult challenge.
The first challenge was that of abandoning the quest for 'homogeneity' and generalisations. As a medical doctor, I was trained to bring back the specific to the general, the exception to the rule. Even if in medical studies the singularity of every individual is part of the background information, the biomedical paradigm demands for its functioning generalisation and 'statistically significant' information. Therefore, when I had to deal with the narratives of the informant, I started to panic: such different stories, such diversified experiences, how would I manage such a variety? The background, gained through work experiences and studies in medical anthropology, helped at least in avoiding the transformation of panic into despair.
In addition, I was working in my own country: what about my third rebirth?
(Srinivas in Nanda 1998, 30) Would I be able to recognise cultural patterns in
which I have been 'drenched' since my childhood? I am quite sure I have lost many
clues that someone, outsider in Italian culture, would have noted. Nevertheless, I
could recognise some typical cultural patterns, especially concerning family life and
experiences of youth protest and drug addiction. These were for me of great interest
as are part of my own life.
Anyway, I went to the field, decided to find an answer to my questions. Contacting the informants was not difficult, I still had good connections with the HIV services and everybody showed interest in my work and was very helpful. Difficulties started with the interviewing as people were eager to talk, but it was hard to keep them on the track of my guidelines. Partly thinking that for an anthropologist every piece of information can be useful in reconstructing the 'native' world and partly because I got involved in the conversations, I collected also information that were not pertinent to my research topics. This cost me some telephone calls to ask basic demographic information that I forgot in the excitement of discussions about meanings and perceptions. Anyway, I had the advantage of repeated contacts with the study unit, the family, through the different members, which allowed me to retrieve information during the following contacts.
People were surprisingly open, we talked about sex, death, family conflicts and
crime, all topics normally considered taboo. This experience confirmed my opinion
about tabooed and sensitive topics: once the favourable conditions are created,
where people perceive the environment as non-judgmental and confidential,
especially with an outsider, it is easy to talk about sensitive issues. Exactly because
the chances for discussion are normally minimal, but the need to face them great. At
least, this is my experience.
Different is the issue about the truthfulness of what people say: I made a point of considering what people told me as true. Anyway, what they were saying was the message they wanted to pass over to me in that moment; I remembered the discussions about "performative ethnography" (Pool 1994) and the production of meanings.
Next came the challenge of data analysis, when all the issues about my background and lack of experience came back and renewed their confounding power. I decide to proceed scholarly. During the preparation of the fieldwork, I had drafted a list of variables concerning my topic and I filled them with the data from the field. In addition, I used some concepts from the available literature on my topic and from previous reading to deepen the analysis.
In this chapter I will provide the some basic information about HIV infection and
the issues related to it. My aim is to frame the context in which the stories take
place to allow a better understanding of the data presented later. In fact, some of the
topics presented here will be discussed again, starting from the point of view of my
I will present statistical data on HIV situation in the world and in Italy. I will discuss the Italian Law for AIDS emergency interventions, the inattention of which has caused great discomfort for people affected by HIV infection and those caring for them. I will present some information about the services available for positive people and the laws dealing with this subject. I will discuss some of the issues related to the new therapies that are changing the history of AIDS epidemic in the Western world and are at the centre of much of the current debates on inequalities of access to drugs. Finally, I will have a short discussion on the phenomenon of intravenous drug use, which, in Italy, is related with the diffusion of HIV infection and has very strongly influenced the lives of some of my informants.
THE STATISTICS [This online version does NOT include the introduction to this section. Please contact me if you're interested in the hardcopy.]
HIV infection and AIDS in Italy
In Italy the prevalence of HIV infection is among the highest in Europe; 20% of all
European AIDS cases (AIDS Care 2000(12):120) are found here. The infection
which started among the intravenous drug user (IVDU) population in the early
eighties, has also spread to the general population, mostly through sexual contact.
Data on the prevalence of HIV infection are scarce, but the National Surveillance System (COA, Centro Operativo AIDS) estimated that at the end of 1999, 104,000 people were living with HIV/AIDS in Italy. The prevalence is higher in men, but it is growing faster among women. The number of notified cases of AIDS by the end of 1999 was 44,924, of which 14,743 are still alive, as reported by the National Surveillance System (COA in Gruppo Abele 2000, 29). The most prevalent modes of transmission are needle sharing among IVDU and unsafe sexual intercourse among homosexual and heterosexual couples. The distribution of AIDS cases by mode of transmission, as reported in the notification forms, reflects the prevalence of risky behaviours and their changes over time.
The data from UNAIDS/WHO Epidemiological Fact Sheet of 1998 report: 64% of total AIDS cases acquired the infection through needle sharing in drug injection, 13% through homosexual or bisexual intercourse and 12% through heterosexual intercourse. Only 2% of AIDS cases are due to transmission via blood products and 1% is due to mother to child transmission. For 8% of AIDS cases the mode of transmission is reported as unknown. In the data based on AIDS notification of the National Surveillance System , in 1999, for the first time, the transmission through sexual contact (homosexual and heterosexual) exceeded that of transmission through needle sharing, representing respectively 48.5% and 43.4%. This change is due to the evident increase in transmission through heterosexual intercourse, while the rate due to homosexual sex has been more or less stable over the years. The shift towards an older age of the notified AIDS cases is another important change. Male AIDS cases in 1989 were 45.5% and 47.4% respectively in the age-group 20-29 and 30-50. In 1999 those rates became 7.6% and 75.9%. The group over 50 also increased. The trend is very similar for females. The mean age of AIDS patients is now 38 years for men and 35 for women. The statistics of the first six months of 1999 show that 10% of the notified cases, in that period, is represented by immigrants living in Italy. (COA in Gruppo Abele 2000, 56). Studies of IVDU in different major urban areas in Italy showed HIV prevalence varying from 36.8% to 60% of the tested groups (UNAIDS/WHO Epidemiological Fact Sheet 1998). In general, big cities show the highest prevalence of HIV infection, due to the high prevalence of population at risk and to better surveillance systems.
Milan is the capital of Lombardia, the most affected region in Italy. The city, where
a high prevalence of HIV infection is noted, was an interesting setting for this
research, as all the actors in the AIDS epidemic in Italy are present.
The first case of AIDS in Italy was notified in 1982. In the following years, the potential development of the epidemic was underestimated by the scientific community, the policy makers and the population at large. Nevertheless the spread of the infection, in Italy and abroad, attracted the interest of mass media and other institutions. They contributed to the representation of the epidemic, thus influencing the perception of infected people and attaching fear and stigma to the infection, as I will explain later.
As the epidemic spread, some Italians experienced the infection in their own environment, giving a more "familiar" face to the infection. This lead to a smoothing of the accusing and stigmatising attitude. Still, fear, misinformation and prejudice often accompanied people living with HIV/AIDS in the community, though at a lesser degree.
THE SERVICES AND THE LAW
In Italy, once diagnosed with HIV infection, a person can go through a procedure
that will allow him or her to obtain free access to medical services. This is a kind of
rite de passage, which introduces the person to the new status of seropositivity,
with all its personal and social consequences. This procedure implies the necessary
disclosure to the General Practitioner (GP), who has to make the request for the
visit to the HIV services and for the exemption from health costs. It also implies
contact with the services and other infected people. Therefore, it represents an
obligatory ritual for the HIV positive person who enters into a different community,
marked with the stigma and stigmata of the infection. The contact with this new
community has different effects: for someone can be the occasion to meet people
with whom to share concerns and suffering, for others can mean the difficult
coming to terms with the images of the disease.
Infectious disease departments all over the country have been overwhelmed by the flow of people in need of medical assistance because of HIV infection. Due to the delay in the planned expansion of hospital beds and to the growing number of people diagnosed with symptomatic infection, many PWHA did not have access to inpatient medical services and had to manage the situation with the help of their family and friends. NGOs committed to the prevention and care for HIV infected people reacted, covering the immediate needs, both medical and socio-economic, of these people and their families.
Some initiatives were taken in the public sector as well. The National Health
Service implemented some emergency intervention. However, it was only in 1990
that the Government promulgated a Law (135/90) on "emergency interventions for
prevention and fight against AIDS", setting the due date for completion by the end
of 1992. The program set the provision and the relevant financing of 6,900 hospital
beds to be added to the 1000 already available. The administrative machine started
to work and lot of confusion followed. To make a long story short, I refer to the
report for the evaluation of the implementation of the Law, presented in 1996 by a
special Parliamentary Commission of investigation: only around 690 beds of the
'urgent' 6900 have been added to the existing ones (Agnoletto 2000, 294).
Nowadays, the need for assistance for the infected population has changed a lot and
the program, established in 1990 and never realised, is already outdated.
The same law also established community care services which should provide an additional 2,100 beds, 75% of which at home and 25% in hospices. The implementation was delegated to the regional governments, which were provided with the financial back up. Basically, the public services should try to guarantee nursing home-care, including intravenous administration of medicine and management of medical devices (urinary and venous catheters). The visit of a doctor at home, on a regular basis, would reduce the need for transportation to health services, the load of outpatient clinics and the permanence in hospital. In some regions the program was started, with great benefits for the patients and their families. The team of health workers was usually accompanied by a social worker, taking care of the administrative protocols and socio-psychological well being of the sick person. Again, it is very difficult to know where and how the program is working, the last data available date back to 1995 (Agnoletto 2000, 296). In Milan, the home care services were organised by the district health services and the coverage was patchy. In some zones it worked quite well; the medical team were providing the basic personal and nursing care, giving some relief to the families. In other areas the services never started, in spite of the available financing.
Since 1990, all HIV symptomatic people under a threshold income can ask for financial support. The invalidity pension, supplied by the central government, is a very low monthly contribution (around 200 USD X 13 months/year), to which an additional amount is added in case of inability to perform daily activities (around 420 USD more per month). In addition, people who are recognised as invalid have priority in the allocation of public housing and free ride on public transport. This contribution can take up to three years in bureaucratic procedure and for this reason the local administration supplies financing in advance. In order to access this subsidy, a doctor should certify the health condition of the person, but the administrative offices guarantee no privacy on HIV status. In case of certified inability to work, those who have been employed and have paid their social security contributions for at least five years, can access a working inability pension, proportional to the paid quote. This subsidy is supplied for three years, and after this period the health conditions are re-evaluated and the right can be extended for other three years. In case of nine consequent years of inability to work, this temporary contribution is turned into a definitive retirement scheme (ASA-Augustus Foundation 1997).
Nowadays, with the changing health situation of PWHA on new therapies, this
subject is under debate. Up to now the law is still enforced, but possible changes in
the rules of the financial assistance are being discussed. A revision of the law
implies new concerns about assisted people being re-integrated in the labour
market. In the United Kingdom, a recent study on this subject was done and gave
evidence to a range of concerns in the group of HIV infected people. They reported
anxiety for a possible loss or change in the medical benefits, the need of finding a
job flexible enough to allow for medical follow-up, the need to be trained for re-
entering the job market after long absence and the worries about possible
discrimination in case of disclosure of the HIV status (Brooks and Klosinski 1999).
The law on assistance and privacy is the final issue that I would like to address. The Law 135/90 art.5 states that health workers must ensure total secrecy about the test result. The test should be done on a voluntary basis and the result should be communicated only to the involved subject and cannot be discriminative for school, sport or work attendance. In 1994, a sentence of the Constitutional Court declared art.5 partially invalid. It stated that HIV test can be imposed to those people whose working tasks can put other people at risk, but did not clarify which tasks are considered dangerous in relation to HIV infection. Again, the issue is matter of debate and fight for the activists, but some of the stories that will follow are clear examples of how the right to privacy and voluntary testing has been neglected.
THE NEW THERAPIES
In 1986, a double-blind clinical trial on the efficacy of azidothymidine or AZT, the
compound that at that time was shown effective against the virus (Yarchoan R. et
al. 1986), was interrupted after 24 weeks for ethical reasons. The group receiving
the real drug was doing better than the one receiving placebo. From then on, AZT
became the standard treatment for people with HIV infection, whose immune
system was starting to show signs of weakening and for people in advanced stage of
disease. Not all the patients could tolerate AZT therapy and it was soon clear that
the virus was able to mutate into new variants resistant to AZT.
Many other drugs have been studied and tested, but no real alternative was available until the mid-nineties, when new compounds reached the clinical practice. More drugs became available and the importance of multiple drugs regimens was definitely proved.
Nowadays, in most European countries HIV infected people have access to what is
called the "combination therapy" or HAART (Highly Active Antiretroviral
Therapy). This is a cocktail of drugs, with different mechanisms of action, that work
sinergically in reducing the viral replication. The viral load can consequently be
decreased to undetectable levels and the immune system is allowed to a progressive,
even if partial, reconstruction (Gazzard 1996). This regimen is advised for
symptomatic and asymptomatic subjects and acute or recent infections (see
guidelines released June 19, 1997 by the U.S. Department of Health and Human
Health services are free of charge for HIV infected people. The Italian Ministry of Health provides antiviral treatment for all individuals who need it. Therapy with a combination of two antiretroviral agents started in 1995 and HIV-1 protease inhibitors (major compounds in the combination therapy) were available for widespread use during the second quarter of 1997. It followed a significant decline in the risk of death from AIDS (Porta 1999). After the introduction of the HAART, the clinical conditions of many HIV infected people have improved as to allow them to return to a more or less "normal life".
Due to the efficacy of the HAART, the AIDS epidemic has been going through a great change. Especially for what concerns the medical and health services, there was a kind of 'revolution', which demanded a rearrangement of the services and new expertise from the doctors. HIV infected people do not get sick as much as before. The data from the National Surveillance System reveal that 60% of people diagnosed with AIDS in 1999 were not aware of their sero-status. A study realised in a referral Hospital in Rome reported that 21.6% of people were tested at a very advanced stage of the infection (Gruppo Abele 2000, 46). Those few data confirm what many of my key informants, doctors working in an Infectious Diseases Department in Milan, told me: "Those who really get sick with AIDS are the 'unlucky ones', who cannot take the therapies because of intolerance or resistance and those who do not know they have HIV". (Massimo, doctor).
Still, the management of HIV infection remains problematic. The new therapies request high adherence to the administration schemes in order to maintain their effectiveness and heavily weight on the daily life of PWHA for their side effects and modalities of assumption. Presenting the results of an Italian study on compliance, the representatives of four associations of positive people affirmed that 20% of the subjects taking the new therapies quit the treatment, mainly because of lack of information (Gruppo Abele 2000). It is interesting to note that a study on treatment interruption, made by the medical establishment found a discontinuation rate of 36.2% and the main reason for it was toxicity, based on laboratory data, responsible for 21.1% (D'Arminio-Monforte et al. 2000). In this research, the reason for discontinuation was stated by the clinicians. My key informants, the doctors I talked with, reported of people having asked to stop the therapy because of side effects, especially those that cause a total change in the body shape, such as lipodistrophia, as I will report later. Doctors have to learn to manage different clinical conditions that are not typical manifestations of HIV infection, like solid cancers, liver failure or metabolic changes rarely seen before. These changes have to be managed while the patient is taking a potent cocktail of different substances with possible interactions, about which we still know very little.
The medical discourse on HIV infection has changed and now proposes more
'evidence-based' conclusions to guide the decision-making process. Viral load and
resistance tests, with quantifiable values, became the basis for therapeutic decisions
receiving more attention than quality of life and individual well being.
Nevertheless, doctors, 'real' people in front of 'real' patients, express many doubts
and concerns in dealing with the current situation.
"The management of the therapy is not easy at all…I think the big mistake is that doctors have no idea what it means to take those drugs. You cannot imagine. You should have a holiday with someone taking the drugs to understand. Yes, doctors cannot imagine the suffering these drugs can give…The number of people refusing the drug is increasing, but it is a conscious choice. You have to think a lot before starting the therapy" (Massimo, doctor, activist in NGO).
No doubt, we are entering a new era of the HIV epidemic. The people who will benefit from the new therapy represent only a small percentage of all HIV infected population. However, the effects of this new possibility will dramatically influence the history of the disease in the rich countries and will have strong repercussions on the rest of the world, which still cannot access these compounds.
Before presenting the data and listening to the stories of the people whom I
interviewed, it is important to gain a picture of the cultural context of the Italian
society, and of the city of Milan, beyond the facts in statistics, laws and services.
In the houses, the health services, the medical community and in the public arena, everybody has a different picture, a different view of what is going on and, at the same time, is immersed in those of the others. It is important then to understand the context of the Italian situation in the year 18th of the AIDS era, considering the factors that contribute to the construction of the 'reality' for the people I decided to involve in my research.
After a short introduction on the social representation of epidemics, I will report on the construction of AIDS as a collective image and in the medical discourse. Both of these constructions influence very much the perception of the infection by the people who informed my research.
THE SOCIAL REPRESENTATION OF AIDS
HIV infection was declared a pandemic in 1987. Through this declaration the WHO recognised the world-wide spread of the infection and called for a general involvement in the fight against AIDS. No country is free from infection, but epidemiological and social realities in each place can be very different, shaping local perspectives and meanings.
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THE MEDICAL DISCOURSE
In recent articles, published in medical journals, on HIV therapy, the efficacy of the multi-drug regimens or HAART (Highly Active Antiretroviral Therapy) is not questioned, but protocols are elaborated to answer some unsolved management questions (Garcia 1999). The current guidelines "emphasise early aggressive treatment using multi-drug combination regimens" as reported by Volberding (1999), one of the most recognised authorities in the clinical management of HIV infection. The studies done until now assessed the efficacy of the therapy, but the information available is enormous and often contradictory.
What are the main points about the therapy that can be noted from the available
articles? I made a review of the recent medical literature on the new antiretroviral
therapy and I will propose some considerations about the actual medical discourse
on HIV infection.
The paradigms used to explain HIV infection and related diseases have been changing over time, reflecting the cultural dominant trends. Virology and immunology have been competing in lending metaphors to represent the disease and in guiding research, but "neither ultimately wins full explanatory power, and both must account for the logic of the other" (Patton 1990).
In the biomedical research, mostly based on quantitative, statistical analysis, the patient as a person is very often neglected, only to become the case of a disease or the acceptor of a new technology. In the first trials, HIV patients were defined by their age, sex, epidemiological risk factor, social background, immunological status and clinical manifestations (symptoms or opportunistic infections), not as unique individuals, but at least, as people, to whom one could attach some kind of identity and related socio-cultural context - even if stereotyped and superficial. These people could be related to suffering, to the enormous distress that HIV infection can cause.
This representation has been changing and in the most recent literature, other, more biological, characteristics are used to define the 'subjects' in the studies. Virological markers became the main targets of medical attention: the individual is managed as the carrier of a certain type of HIV. Documentation about the virus is increasing, while characterisations of the sufferers are decreasing. You can read about the virus type, quantity, susceptibility and resistance, replication, suppression, rebound, long term reservoirs (sometimes called sanctuaries) and activity, while the subjects in the study are described only through their previous pharmacological history, risk of progression, development of AIDS, opportunistic infection and immunological status. In many publications, the patient regains his/her identity because of a lack of compliance to the pharmacological regimen, thus becoming a source of danger for the future and the community, a potential cause for the development of resistant viral strains.
There is a progressive detachment from patients' real lives, and the construction of
a new object, a biological container, that has lost even its human bodily
characteristics. Still, many studies are based on 'real life' situations. Large cohorts
of patients have been followed up and only clinical outcomes (the appearance from
AIDS related symptoms or death for AIDS) considered, but the main concern is
always to measure the efficacy of the drug combinations, expressed as risk rates for
AIDS progression or death. I did not find any study, in the medical literature,
concerning the possible change in the quality of life or the determinants of the well
being of infected people, even if the influence of these factors on immune function
is widely recognised.
As I mentioned before, the management and the relationship with 'real' people is far more complex. Apart from the diversified needs that go far beyond the antiretroviral therapy, the decision-making on drug intake is a constant process of negotiation between medical knowledge, patient's beliefs, desire, possibilities and tolerability. The people with HIV/AIDS that have been stripped of their individuality and even of their bodies in the clinical trials, regain their uniqueness in the daily management of their 'clinical' life. However, this process of negotiation has not been yet considered in depth.
The changes in the medical discourse about HIV infection reflect the technological achievements and are supported by economical interests. The medical discourse in turn influences the development of the research agenda and the effects of the above mentioned changes are already visible in the agenda of the AIDS Clinical Trials Group (ACTG). The focus of current and future research is in the development of drugs to reconstruct the immune system and in defining the best rescue therapy for people with multi-resistant strains or for whom the available regimens failed. The research for the management of opportunistic infections is shrinking; there is no account of all the people who do not have access to the HAART and will still experience opportunistic infections as before. The management of such conditions was far from being satisfactory, but the research on the complications of HIV infection takes into consideration only patients on HAART. Great interest is reserved for 'naïve' subjects - those who never received any therapy, who are supposed to possess the 'original' strain of the virus, not yet 'spoiled' by contact with drugs (ACTG web site).
The literature regarding family care giving to PWHA in western countries is rich: the majority of these accessible studies focuses on homosexual couples or on the family context in relation to the health services or to the terminal stages of AIDS. These studies describe activities (Wrubel 1997), and behaviours (Hayes 1994) of caregivers, the psychological distress (Irving 1995) and physical costs (Leblanc 1997) of care-giving activities and the coping mechanisms (Folkman 1997) used by people caring for HIV positive subjects.
These studies were mostly done before the introduction of the new anti-retroviral
therapies; therefore, they analyse care giving in a period in which AIDS was still
burdened with high mortality. In that situation, the care-giving role imposed a much
higher demand on the family members. Nowadays, the effectiveness of HAART has
changed the perspectives of the future and the general conditions of PWHA;
consequently also the roles of family members have been changing and the family
has had to adjust to the new situation.
Even if now it is widely accepted that the therapeutic possibilities had changed the life perspective of PWHA in western countries and therefore the meaning of living with HIV/AIDS, the literature is very poor on this topic. Few articles appeared analysing the issues at stake in the 'new life' of PWHA and those around them . None of these studies takes the family as the unit of analysis to explain the adjustment process to the new perspectives.
As Marianne, the mother of a PWHA, one of my key informants said: "If you come to know that your son is HIV positive today it is very different. My experience goes back 15 years when that was very different. Now a PWHA can have a normal life, except that they have to take medicine. Being seropositive today you can do everything".
In this chapter, I will describe the individual and socio-cultural factors influencing interaction in the families of people with HIV infection. I will present the themes which emerged during the extensive conversations with the informants of my research. Before describing the data, I would like to clarify some terms that I will be using in the following paragraphs. In my research, two types of family organisation are represented. One is that formed by parents and adult children in which either the PWHA never left the family of origin or he/she went back after a period of life outside the family. I have to note that mothers were very often the only parental figure present in the family. Other relatives can surround the nucleus of the family: grandparents, aunts and uncles are often named among the social network. The other type is formed by partners, married or not, with a stable relationship. In my sample the duration of the partnership ranged from seven up to fifteen years. For couples, with or without children, the relationships with other relatives are also part of the social life.
I will present data on the interactions with the 'external world', by which I intend the social network involved in the daily life of my informants. This includes neighbours, friends and work colleagues.
[This online version does NOT have the entire section. Please contact me if you're interested in the hardcopy.]
All along, I have been stressing how the HAART has changed the history of the AIDS epidemic in the countries that can afford to provide it. I have explained the problems concerning the management of the HAART and presented the medical discourse on it. In this chapter, I will discuss the new therapies from the point of view of the people who daily have to 'swallow' the numerous pills and of those around them.
[This online version does NOT have the entire section. Please contact me if you're interested in the hardcopy.]
In this chapter, I presented the issues concerning the combination therapy from the
point of view of the informants: PWHA and their caregivers.
I discussed how PWHA and their families internalised the medical discourse on the HAART and its effects and I presented some of the major constrains in dealing with the treatment.
In discussing the impact of the new therapy on the care giving, I presented the important change which took place in the time orientation of PWHA. The possibility of a future is impinging the daily life of PWHA. They want to have a normal life, in which they can realise their plans.
The impact of HIV on the life trajectory of each member of the family has a profound influence on the ability to adjust to the change in perspective of PWHA. Mothers, whose identity was spoiled by this experience and who, through care giving, regained a sense of control, find it more difficult to adapt to the demand of normality of their children. This delay in adaptation increase their suffering and hinders the empowerment of their positive child. Partners seemed to be adapting faster to the renewed perspectives for the future. This was especially true for those who since the beginning have been minimising the impact of HIV infection on their life plan.
AIDS history began with the notification of few cases of a rare disease in a group of
homosexual men in the United States. From then on, an enormous amount of efforts
has been invested in understanding and controlling its course.
Due to the powerlessness of clinical medicine in facing the fatal effects of HIV infection, for many years the basis of its management have rested in prevention and care. Families have been deeply involved in the informal care for PWHA and responded in different ways to the multiple needs of their HIV positive member.
The biographical disruption caused by a chronic illness is burdened, in the case of HIV infection, by the social stigma attached to it. The initial construction of AIDS as a sexually transmitted disease affecting the 'deviants', those whose behaviour fell out of the dominant models, did not lose its powerful effect over time. Even after twenty years from its acknowledgement and the numerous information campaigns, HIV infection is often experienced in concealment and secrecy, for fear of stigma and discrimination. This attitude, together with the fatal outcome of the infection, contributes to the disrupting effect of an HIV diagnosis.
Due to the social image of AIDS as a discreditable disease, the presence of HIV
infection brings disruption not only to the HIV positive subjects, but also to those
around them. The reaction to such an event is an on going process which determines
changing attitudes and behaviours at an individual and interactional level.
The aim of my study was to describe the response of the family living with an HIV positive member. Therefore, the family was taken as a unit of analysis and care giving as a focus for analysis. I chose this approach to lay emphasis on familial relationships and highlight the social and cultural factors at stake in shaping the response to HIV infection in the family.
I interviewed PWHA and their main caregivers. I tried to grasp from their stories
the meanings of the experience they were facing. I collected stories of suffering,
and illness, stories of shame and despair, but also stories of children growing, bills
to pay and future to construct. The enormous heterogeneity was exciting and
To make the research more interesting, there was the recent introduction of the combination therapy that was changing the history of AIDS epidemic, transforming a fatal illness in a chronic condition. The therapeutic cocktails, with their numerous pills and burdensome side effects, did indeed ameliorated the health conditions of some of the PWHA, giving them the opportunity to think to a future.
It was important to understand what was going on in the family after the
introduction of the combination therapy, in order to document the issues at stake
and outline a picture of the situation in the current period.
Italy is, in Europe, among the mostly affected countries by HIV infection which spread first among people using intravenous drug and reached later the general population through sexual contacts. The involvement of IVDU supported the public image of AIDS as a disease of the 'marginalised' groups, fostering the attitude of blaming the victim for their own HIV infection. The position of the Catholic church and the late response by public health authorities contributed to the marginalisation of the affected population.
Italian family, embedded in a context of public stigmatisation and lack of
assistance, turned to its own resources to face the situation. Roles in the family and
internal relationships decided the distribution of tasks and responsibilities. The
social network, carefully selected, provided the necessary support for practical and
psychological assistance. Different strategies were adopted to cope with the feelings
of uncertainty and with stigma.
Within my group of informants, I have found that stigma is still managed by PWHA and their families through concealment and careful information management, which takes up much of the family's energies. This strategy of concealment is still very much a part of living with HIV in northern Italy.
Uncertainty, even in the face of a regained future, is very much an issue in the
illness experience. I discussed some of the strategies used by PWHA and their
caregivers to deal with this feeling.
Now, in the era of combination therapy, PWHA demand support for being re- integrated into a 'normal' life and family members respond to this quest at a different pace. Mothers who through care giving reconstructed their interrupted life plans by reverting to the nurturing role, which gave them a sense of control, are experiencing more difficulties in adapting to the new time perspective of their HIV positive children.
The attitude of spouses varies in dependence of the expectations they had from the
couple relationship. Spouses who did not allow HIV presence to spoil their life
trajectories, but rearranged it so as to minimise its impact on their plans for the
future, are now facilitated in adjusting to the new demand of their HIV positive
The situation can be different for couples that were established before the disclosure of the HIV infection, in which the planned trajectory did not include the 'discreditable' experience of living with HIV. Unfortunately, the limitation of my research sample did not allow for further analysis of this possibility.
Conclusively, from the data I collected through my fieldwork I would like to
suggest that, as for other chronic illness, the adjustment to an HIV positive
diagnosis depends very much from the effect that this has on the individual's
identity. This, in turn, is shaped by the social interaction of the individual identity.
In the northern Italian context, specifically in the city of Milan, and in what concern
family care giving, familiar roles and consequent life plans have a great influence in
the response to a stigmatised condition such as HIV infection.
These conclusions should be taken into consideration when external support is requested, in counselling and medical settings. The quest for normality of PWHA, growing stronger with the new possibilities for the future awakened by the HAART, should be supported through the careful analysis of familial interaction. Special attention is needed for mothers, who have to find a new role within the family, where the nurturing relationship can be transformed into a more balanced relationship of mutual confidence and reciprocal support. The aim of the intervention should be targeted to the trajectory reconstruction and to the reduction of feelings of guilt and failure.
Another issue to address in the public and private arena and that is worth of future
research is the paternal role. In my sample fathers' perspectives were not
represented. This is not a case, but a fact that can be addressed through the
reconsideration of parental roles and gender issues. The social and medical services
can foster a greater involvement of fathers in care giving and support of HIV
It is also evident for my conclusions that more efforts should be direct to the fight against the stigma associated with HIV infection. The growing mobilisation of HIV positive people can do a lot in this direction, but institutional support and mass- media participation is necessary to strengthen the message.