Pensons famille, Volume 9, numéro 51, septembre 1997, Article "The impact of AIDS ..."

	Le Regroupement inter-organismes pour une politique familiale au Québec
	Pensons famille	Volume 9, numéro 51, septembre 1997

The impact of AIDS on families
or the conditions of life of the infected persons and their families

Content

Foreword

Introduction

1. Presentation
1.1 Methodology
1.2 Definition of family

2. Particulars regarding HIV-AIDS
2.1 Types of transmission
2.2 Portrait of the infected population

3. Impact of AIDS on families
3.1 In general
3.2 According to the type of transmission
3.3 The time of disclosure
3.4 The cultural community
3.5 According to the region
3.6 Aboriginal communities
3.7 The importance of the familial dynamic before disclosure of the illness
3.8 The workplace

4. Acceptance / Integretion within the family
4.1 Needs of the family and friends
a. Information
b. Medical resources
c. Legal problems
d. Need for a break
e. Support
4.2 Resources available for families and friends
4.3 The period during which the person is HIV positive
4.4 The period of AIDS
4.5 Preparation for death and post-death
4.6 To which extent are the resources available?
4.7 Are the resources used?
4.8 Who uses the resources?
4.9 In the regions
4.10 Determinants of integration

5. Recent changes in the health care system
5. 1 Treatments

6. Provincial & Federal policies on AIDS

Conclusion

Bibliography

The impact of AIDS on families or the conditions of life of infected persons and their families

Foreword
This paper is the result of a study conducted for the Regroupement inter-organismes pour une politique familiale au Québec (RIOPFO). This organization is a coalition of different groups that are working in the interest of families. The RIOPFQ is the leading representative of the family movement vis-à-vis the Government of Quebec. The purpose of this study is to inform the members of the RIOPFQ and the final report may also be used in future consultations with the Government and other public organizations.

The research was mainly based in Montreal. Approximately one million people live in Montreal. It is the metropolis of the Province of Quebec, which has a population of 7 million. Quebec is the only French province in Canada and this paper is an English translation of the original french version ¹.

Introduction
This paper is the final report of the study on the impact of AIDS on families. This study had two main objectives. The first is to investigate the dynamic of the personal relationships between HIV positive people and their families. The second is to explore the types of resources available for families in Quebec. These resources can respond to different needs of families whether economic, technical or emotional.

This study springboards from the desire of the RIOPFQ to know more about how AIDS affects the relationship between the HIV positive person and his or her family. In contrast to other diseases (like cancer), we do not hear about resources for families. This lack of information is what inspired the present study.

This research project provided an opportunity to establish central database regarding the problems associated with AIDS. As will be seen, the problems can only be analysed accurately if the variable situations of the families are taken into account This variability exists as a result of the factors that influence the situation of HIV positive people and their families. The main factors are: geographic region, gender, age, type of transmission, sexual orientation, ethnic community and relationships between the HIV positive person with his or her family before the disease.

Despite all these variables, people infected with AIDS share some common traits. First, AIDS either strengthens familial ties or destroys them. Second, AIDS awakens the taboos related to homosexuality. In addition, it also raises the biases concerning prostitution and drugs. In other words, studying AIDS also means studying the taboos related to homosexuality, prostitution and drugs. It also leads to the study of another delicate area: familial problems.

In order to give a global picture of the situation, this report contains six general themes:
1. Presentation of the research problem
2. Particulars regarding HIV-AIDS
3. Impact of AIDS on families
4. Acceptance / Integration within the family
5. Recent changes in the health care system
6. Provincial & Federal policies related to AIDS

1. Presentation
1.1 Methodology
Three research methods were concurrently used in order to collect data for this paper. First, in order to contextualize the research, an extensive number of documents were consulted. Even if a lot of information about AIDS is available through government agencies and libraries, few are dedicated to the experiences of families and friends of HIV positive persons.

Second, this lack of information was compensated by the data collected via interviews. Thirty interviews were conducted over an eight-week period. The respondents were from community organizations, hospitals, CLSCs² and half-way houses. Despite the problem of confidentiality³, I was able to talk with some infected people, their families and their friends.

Finally, in order to know what is going on outside Montreal, I contacted the key people who are in charge of organizations which assist HIV positive people in all regions of Quebec.

1.2 Definition of Family
In the context of AIDS, the concept of family has different meanings. This is why when reading the word family one has to keep in mind that it generally includes a social network. When necessary, I will distinguish between close kin (mother, father, brother, sister), extended family (uncles, aunts, cousins), spouses, common-law partners and social networks (may include some family members and friends). In many cases, the only person aware of the disease is the social worker. In this context, they may also be considered as being the only "family" of the infected person. The main reason why distinctions are necessary is because in the homosexual community (which is the principal group infected by AIDS), links with the natural family are often broken. Many homosexuals, however, consider that they have a family, but it includes people who are not blood relatives.

2. Particulars regarding HIV-AIDS
2.1 Types of transmission
The type of transmission has a direct impact on how the family will react to the HIV positive person. For example, if someone contracted the virus through a blood transfusion, the probabilities that he or she will be rejected by his or her family are lower than if he or she contracted the disease through homosexual relations. Indeed, the three main types of transmissions are: sexual intercourse (homosexuals, bisexual heterosexual), blood transmission (mainly through the sharing of contaminated needles and syringes), transmission from mother to child (during pregnancy, delivery, and more rarely during breast-feeding).

2.2 Portrait of the infected population
While statistics in Quebec are quite accurate it remains difficult to get the exact picture of the situation of AIDS in the Province, because all infected people are not yet identified. Without a diagnosis, it is not possible to record the exact number of people infected. On the other hand, when someone is diagnosed, the case is reported to the AIDS Surveillance Program of Quebec.

In Quebec, 67 out of 100, 000 persons are infected. This is the second highest rate in Canada after Ontario. As of June 1998, a total of 5308 cases were declared to the AIDS Surveillance Program. Sixty-four percent of these reported cases have resulted in death. Nearly 89% of the infected people are male and 98% of all AIDS people are over 15 years. At an international level, Africa comes first with a rate of 900 out of 100, 000.

A growing number of reported cases come from the heterosexual community. This implies that an increasing number of women are now HIV positive. The sharing of needles or syringes for injecting drugs like cocaine, heroin or steroids can transmit infected blood from one person to another. It is now, in addition to sexual intercourse with an infected person, the main reason why heterosexuals are infected with the HIV virus. Adequate screening of blood began in November 1985. Since then, heterosexuals (and homosexuals) are no longer infected by HIV virus through blood tranfusions.

Children are a new demographic group infected by contaminated blood. With a growing number of women infected with AIDS, new born babies are more frequently diagnosed with the disease. There is a 15-25% chance that an infected mother will transmit HIV to her baby during pregnancy, at birth or during breast feeding.

3. Impact of AIDS on families
3.1 In general
Taboos concerning AIDS imply that families and society in general make clear distinctions between the different types of transmission of AIDS. This reasoning implies that HIV positive people are not simply considered as sick people with a disease. They are considered as sick people surrounded by taboos. At the same time they become victims of prejudice and disease.

Families have two main types of reactions. First, there is shame. Families are afraid of being rejected by their social network because of gossip concerning the infected person's sexual orientation or concerning a possible drug addiction of the HIV positive person. Shame inevitably leads to the creation of a distance between the families and the infected person. Exclusion may also be a consequence of shame.

The second type of reaction is a sense of powerlessness, which entails sadness. Consequently, AIDS can bring some family members and friends closer to the sick person. On the other hand, the fear of losing a loved one may create tension and some members of the family may prefer not to be with the infected person because he or she may die soon.

AIDS provokes another type of complex reactions. Even in cases where the HIV positive person is welcome, another problem exists: the fear of contamination. Despite the publicity campaigns on the ways in which AIDS can be transmitted, a lot of people remain unaware of the facts. Consequently, they think that there are risks in touching an infected person or using the same bathroom or the same dishes. In order to make sure that warm relations can be established, it is very important that people receive accurate information about how AIDS can be transmitted. Discrimination is less important among the homosexual community because they are very well informed.

In general, the extended family is not the most supportive. Mother, father, sisters and brothers are generally more accepting and supportive. Parents that are older, however, have more difficulty accepting the situation. It is even more difficult if the virus was contracted as a result of homosexual relationships because many elderly people are not as accepting of homosexuality and drug addiction.

Among close members of the family the mother is the one who generally helps the most. She keeps the disease a secret and takes care of her children. If the mother is unable to do this, often another female figure, like a sister or a girl friend will take on that role. In other words, it is generally a woman who first becomes aware of the disease of the infected person. If an infected person is a male homosexual, his partner will be supportive and understanding, unless there is a separation.

The variety of potential reactions implies that HIV positive people have to carefully choose with whom they will discuss their situation carefully. Bad reactions from people you love can turn out to be a burden. The problem is that it is not possible to know in advance what kind of reaction to expect.

3.2 According to the type of transmission
Most of the time, shame comes from taboos surrounding homosexuality. Even if there are fewer prejudices toward homosexuality since the '70s, homosexuals are still victims of all kinds of social stigmatization. For many years homosexuals formed the group in society at the highest risk, which is why the population often associates AIDS with homosexuality. This situation signifies that if homosexuality is not well accepted by a family, AIDS will certainly not improve the relations between the infected and the family. For some people, AIDS is a just punishment for homosexuality. In other words, people tend to say that if a homosexual contracted AIDS he deserved it. For all these reasons, a homosexual with AIDS has little chance of being accepted by members of a family who does not accept homosexuality. On the other hand, in the homosexual community, common-law partners and friends are more able to accept AIDS.

In cases of infection by blood transfusions or by utilization of other blood products contaminated with the virus, there is a lot of anger. Either the infected people or their relatives and friends will be angry toward the medical system that permitted these fatal transfusions. Even if the disease was transmitted by infected blood, many cases show that some members of the family still remained suspiscious about the cause of AIDS. They will continue to suspect that the person had homosexual relations or took narcotics.

These ambiguities do not exist in cases of hemophilia It is easier to accept AIDS for the family in the sense that it is a « real » accident. But again, nothing is simple with AIDS. The taboos about AIDS render it difficult to disclose the disease. Firstly, the infected people, as well as their family and friends are in general very angry with the system. Secondly, they do no easily talk about AIDS with their family and friends because of the fear that they will think it is a case of bisexuality or drug use. So, the isolation is very painful for the sick person and the people who take care of them. The people who know about the disease will keep it secret in order to respect the private life of the infected person. The importance of confidentiality implies that the people close to the infected person are also isolated. Consequently, it is more difficult to find technical ⁴ or moral support.

For a mother who transmits AIDS to her child, the pain is very intense. The feeling of guilt is also very present. At the same time, she tends to question her past or the type of relations she had.

If a married man dies of AIDS because he was bisexual, the reactions of the family are quite different. The differences lie in the fact that at the time of the death, the wife and the children may learn that he had sexual relations with other men while he was married. This is obviously a huge shock; these cases raise serious questions regarding infidelity and homosexuality, as everybody thought that the husband / father was loyal and heterosexual.

3.3 The time of disclosure
If the HIV positive person does not disclose his or her disease to his or her family until the AIDS symptoms start, it is sometimes more difficult for the family to accept it. Because death is close, the pain is more acute. The family members also wonder why they did not learn about it before. Why did the infected person say nothing? What did they fail to do to create a feeling of confidence? Here it is important to note that the infected person will often choose not to talk about their disease to the people they love in order not to worry them. They may also make this decision because they want to continue a « normal » life.

It is easier for families to cope with the new reality if they know about the situation at the very beginning, mainly because they have the chance to spend quality time with the infected person. The chance to see the person in good health for some years is an opportunity to ease into the sorrowful situation. But one has to be careful not to associate good health with absence of disease.

The most difficult experience for the family is to learn at the same time that the person is homosexual and has contracted AIDS. This situation is also difficult for the HIV positive person, because if his or her family did not know about his or her sexual orientation it is generally because he or she did not have close relationships with them.

3.4 The cultural community
It is not possible to describe the situation in every cultural community, as each community could be the subject of a separate study. What is common to all of these communities is the fact that people perceive it essential for women to have children. The capacity to give birth is part of a woman's role and if she is not able to fulfil this role it is considered to be a malediction. So, if a woman is HIV positive, there will often be a denial of the disease and she will continue to have children despite the high risk of contamination.

This denial of the disease implies that the woman will not talk too much about her disease, dangerously increasing the possibility of contaminating the people with whom she lives. On the other hand, medical intervention is problematic in houses where there are taboos towards AIDS. Also, people in these communities know each other. Confidentiality being very important, they may be afraid to use local resources which have been adapted to their needs and culture because they fear being recognized.

Finally, certain religious beliefs will increase the feeling of guilt. In groups where death is seen as an eternal journey in paradise or in hell, AIDS, homosexuality or narcotic addiction are perceived as a sin.

3.5 According to the region ⁵
Outside Montreal, the population is smaller; people know each other and it may be an obstacle for family and friends to ask for help if they want to preserve confidentiality. Fortunately, HIV positive people are generally well accepted by their family in these regions. But more often, the extended family will not know about the disease; only close family members will be aware of it. The main reason for this can be found again in the social taboos linked with AIDS. These taboos are even more present in regions outside Montreal. Fewer homosexuals live in regions outside Montreal. Many of them will move to Montreal because it is easier for them to be accepted and to be anonymous in a metropolis ⁶. The prejudices surrounding AIDS are also more present in regions outside Montreal because there is less information about AIDS. This is a problem, as more and more homosexuals go back to their home towns to be cured from AIDS or to die.

Everywhere in Quebec, the number of cases where infection occurred by drug injection has increased. Indeed, in Montreal as well as in the regions outside Montreal, it is no longer possible to associate AIDS solely with homosexuality. Bisexuality also increases the risk of contracting AIDS. But people in the regions also must cope with the fact that heterosexuals may also have AIDS. The lack of information is an obstacle to raising this awareness.

3.6 Aboriginal communities
These communities are also affected the increasing number of AIDS cases. Certain characteristics of their way of life create factors of risk such as poverty, monoparental families changes in the traditional structures of the family, alcohol and drug problems. Because of the difficulties experienced by many members of the aboriginal communities, their access to health care or other resources are ridden with complications. These factors are to be added to the fact that aboriginal people do not have the same access to the health system, because access depends on whether they live on the reserve and on whether they have indian status.

3.7 The importance of the family dynamic before diclosure of the illness
If the links between family members and friends are good before the disclosure of the disease, the relations will be more harmonious thereafter. If the relationships were not good, the disease will not change things!

3.8 The workplace
Statistics do not show any cases of AIDS contracted at a workplace. This can be explained in two ways. Firstly, in order to be considered as a case of « professional » AIDS, the risk factor must be in the work. Secondly, people are afraid to talk about it in their workplace because most of the time their colleagues are afraid of this disease. Moreover, the breach of confidentiality often has a dramatic impact: many infected people have lost their jobs after confiding in a colleague. We also find some cases where the infected person was rejected. So close colleagues may actually become the executioners.

Sex workers ⁷ are generally considered to be at high risk. But it is important not to generalize. There are three types of sex workers: street prostitutes, dancers and escorts (men and women). Activist organizations pretend that more prostitutes are now using condoms because they are aware of the risks associated with their work. Street prostitutes, however, find it more difficult to always use condoms. Since the police are trying to « clean » the street, they do not have time to negociate the use of condoms. The attitude of the police is motivated by the laws against solicitation. As a consequence, prostitutes have had to move to different areas. This is why the red light district ⁸ is smaller than before. Also, with increasing poverty, more and more women are forced to engage in prostitution at the end of the month, when their welfare living allowance is all spent. They will receive clients at home, thereby creating a space of vulnerability. Because these women work alone, they are less protected. The situation on the street used to be different: four or five women would solicit together, they protected each other and they knew with whom each was leaving. For the prostitutes who are still working on the street, the job is much more difficult. Some organizations distribute condoms and syringes, only to see some policemen take them away. Young prostitutes, both boys and girls are more vulnerable. At this age, contrary to the older prostitutes, they often work for a pimp, which implies that they have more obligations and that they work under more pressures.

What is interesting, is that contrary to common belief, it is not through work that sex workers contract AIDS: it is through drugs injections. Not all prostitutes use drugs however. The organizations that work with sex workers are adamant that sex work is not the main source of risk: drugs are the main problem regarding the transmission of AIDS and the majority of prostitutes and other sex workers do not take drugs.

For many sex workers, family ties have been broken or, in the alternative, family members are not always aware of their job. If the disclosure of AIDS and prostitution is made at the same time, it may be a huge shock for the family. Again, friends may be a better source of help. In many cases, however, street-friends will not be very supportive when someone wants to go through detoxication.

4. Acceptance / Integration within the family
Generally, an HIV positive person will not be kept at the hospital if the person is able to return to his or her home and pursue a « normal » life. Even if some medicines may have undesirable effects, the infected person, the doctors and the social workers feel that it is better for him or her to remain at home. It is even more important in the case of children. Family provides a sane environment for the terminally ill.

Overall, more and more family take care of infected people despite of the taboos surrounding AIDS and homosexuality. So, even if the situation is not free from tension, it is easier for families to accept AIDS.

4.1 Needs of the family and friends
HIV positive people and their families may have different needs in certain respects but in others, they may be similar.

a. Information
At the outset, family and friends need more information about AIDS. Afterwards, when the virus becomes active, the need for medical information increases. Ideally, this information should be personalized. It is, however, very difficult to find this type of service because in order to know exactly what is going on, one has to talk directly to the doctor, which requires the consent of the infected person. Such an agreement is not always present. In addition, people are not necessarily aware of the fact that you can accompany someone to the doctor's if they so desire.

b. Medical resources
In order to efficiently help the infected person when he or she is sick, it is very important to know what medical resources are available.

c. Legal problems
People helping the infected person need to know the rights of the HIV positive person. In the latter stages of the illness, families also need to know the procedures to obtain a power of attorney if necessary.

d. Need for a break
During the illness, whoever helps the sick person requires some rest and will appreciate if someone can give them a break. It is necessary for them to talk to someone who can advise them concerning how to take care of themselves. Other practical services are also necessary: help with cleaning, specialized medical needs and transportation of the HIV positive person to medical appointments or other meetings.

e. Support
It is clear that at a psychological level it is very difficult to take care of someone who is very sick and who may die. Consequently, family and friends often need some psychological support through the different stages of the illness and after the death of the person. It is very important for them to know that they are not alone: others also have experienced the loss of someone because of AIDS.

4.2 Resources available for families and friends
There are three main places where family and friends can find support: in the health care network (hospitals and CLSCs), in community organizations and in half-way houses. The common characteristic of these resources is that they are indirect. This can be explained by two phenomena. First, the majority of the resources for families are only available if the infected person agrees to it. Second, few resources have as a main objective to help family and friends.

When the diagnosis is pronounced, social workers, psychotherapists and other community workers are always open to the demands of support from the infected person and family members. For example, they may organize a family meeting to provide information about the illness. At the same time, it is an opportunity to answer all types of questions and to give support to the family. Short-term psychological support is also available for family members and friends.

In the hospitals, especially in the AIDS units, doctors are aware of the importance of the social network of an infected person. Since the recent budget cuts in the health care system, doctors inherited a larger responsibility because they have a shorter period of time in which to treat a person. Meetings between family helpers and the doctors are possible. Some doctors, however, are more pro-active than others.

Social workers in hospitals and CLSCs play a very important role. They organize the return home of the infected person and they take into account the dynamic of the social network of the sick person. They must make sure that this person will get good homecare services. Those who take care of the infected person stay in touch with social workers. Obviously, some social workers are more aware of the problems involved with AIDS patients than others. It is easier for the family if the services are provided by a specialized group in hospitals and in CLSCs. Unfortunately, it is not available in every region. When there are no specialized services for AIDS, help for the HIV positive person is provided through home care services. When the patient is less sick, a nurse will make home visits to gave injections or to verify medications.

Many social organizations provide services, but it is still difficult to fulfill all the needs. Few groups directly help family and friends. Resources are mainly available during the day. 24-hour services are non-existant, which implies that many people who take care of a HIV positive person rapidly becomes exhausted. The following is a description of the resources available for them.

Centre Pierre-Hénault
The mandate of this Centre is to support the people who take care of the HIV positive person in order to facilitate their role as companion or caregiver. They also help during the period of mourning. In addition, they have volunteers who accompany the HIV positive person to appointments, which provides a break for the family.

The support is individual on a short-term basis as oppose to long term support like therapy. There is also the possibility of getting support through groups: groups for the partners and spouses, groups for the mothers, groups for the caregivers. These groups meet every week for a period of eight weeks. Each group is composed of 5 to 10 participants. The goal is to provide an opportunity to share experiences with others. It is very important for people to know that they are not alone going through such an experience. The need to share is the most important one after the need to have information about the disease.

Bethanie 's children (Les enfants de Béthanie)
This organization takes care of 20 to 30 families. Psychological support is offered through individual meetings or by phone. It is also possible to match a child with a volunteer, thus providing a break for parents. This person performs regular activities with the child and accompanies him or her to medical appointments. Additional services allowing the parents to take a break are also available. In addition, celebrations, activities and summer camps are organized throughout the year.

Canadian Hemophilia Society
This society organizes week-end sessions for infected people and their families where specialists provide psychological support and information. It is also possible to call this organization to ask questions, to know more about the resources available (at a financial level for example) or simply to break the isolation.

Ste-Justine's Hospital Centre for mother and child
Ste-Justine hospital specializes in providing health care for children. They have a Centre where a multidisciplinary team helps mothers and children with a holistic approach. This team includes doctors, nurses, social workers, psychologist, a dietetician, a pharmacist, an ergotherapist, a physiotherapist, a research assistant, a research coordinator and a care coordinator. The focus of this Centre is really family oriented.

Half-way houses
Access to such houses is easy. Even people on social welfare ⁹ are accomodated. People who are in these homes do not want to die in the hospital and they can not choose to die in their own homes. For many infected people, these houses represent a new family. In general, infected people do not have a lot of contact with their natural family.

For the family, it is possible to find short-term support in these houses. For example, they have access to psychological support and to information on AIDS or on the health of the infected person. This is done out of respect for the wishes of the infected person, because he or she may want to maintain some privacy and will not want people visiting only because he or she are sick. They do not want to be overprotected.

One bedroom is available for members of family who wish to stay with the infected person during their last moments. Family and friends are always welcome and they are free to share a meal whenever they wish.

Other resources
Even if there are few resources available, all community organizations and social workers are always ready to support family members. Most of the time, it is the infected person who will inform his or her family of the resources available. In order to know all the available resources, the « Resources Guide », published in 1997, is an extensive compilation of all resources in Montreal and in the regions. Those resources can be consulted on an anonymous basis.

Resources for sex workers
It is increasingly difficult to contact sex workers, especially the prostitutes, because they are more dispersed than before. Street workers are very active sensitizing prostitutes to the use of condoms. They also distribute condoms and syringes. Passage takes care of people from the street who need a break: they can stay for a period of one year and regain their physical and psychological health. On the other hand, Stella is a day centre where people can go for company, to discuss their situation and to get legal or health advice. These points are important because prostitutes may have difficulties getting proper treatment: many doctors and nurses have prejudices against them and may not take their problems seriously. Some clinics are more open to their problems and community organizations try to sensitize the medical community to the reality of prostitutes.

Overall, there are not many organizations specifically taking care of the prostitutes. Other groups may indirectly take care of them such as, Passage, Sero Zero and Cactus. Young men involved in prostitution more frequently use the services of the two last orgamzations. Most of the time, families of sex workers are disfunctional. As such, they are not really present in cases of AIDS and it is probably why, so far, there is no available resources to take care of the family members.

4.3 The period during which the person is HIV positive
The HIV positive person can continue to work. In the particular case of persons with hemophilia, they are compensated by the government. It is also possible for the HIV positive person to retire at a younger age. During that period, CLSCs and other resources are not really active. They play a more important role when symptoms of the illness are apparent.

For HIV positive person, it is very difficult to deal with emergency situations. The problem is that when someone is sick, it is not easy to organize things in advance! On the other hand, some families ask impossible things, such as the services of a nurse for 24 hours a day.

When the family needs to contribute financially to the purchase of medical supplies, some problems may arise, because not all families are able to help. The problems are even more acute when the HIV positive person had to leave his or her job because of AIDS. The government is not very helpful in those cases.

The cases of children. Children are generally not informed of their illness. It is only around the age of 14 that the family and social workers will prepare him or her for the realities of his or her health condition. At this age it is imperative to inform the adolescent because he or she may engage in sexual relations. Prevention being the best way to avoid AIDS, the teenager must use condoms. Generally, the news will be broken in the presence of a social worker.

Placing children in day-care may be difficult, because day-care personnel are afraid of contamination. If the latter is not the case, then few people will know about the illness of the child so as not to provoke panic among the parents of other children.

4.4 The period of AIDS
HIV infected people decide for themselves where they want to die. But if their choice is to die at home, social workers and doctors must insure that the social network is strong enough. The family must be prepared to take care of someone who will be very sick and who may not die as quickly as they think. This possibility implies that the situation will be more demanding than what may be expected.

CLSCs take care of the services at home. Other organizations can provide support, a break and psychological services. Many of the people who are taking care of the dying person nevertheless
become exhausted. Also, many of them have the impression that they are not doing enough even if they do more than their best to comfort the infected person.

4.5 Preparation for death and post-death
Living with the probability of death is a series of mourning, for the infected person as well as for family and friends. For the people close to the dying person, preparation for death is very important. Because they are taking care of someone who is very sick, they often forget about their own needs. Consequently, when the infected person dies, they feel very empty. Others have a feeling of guilt, mainly parents who may wonder what they did wrong. Mourning is never easy, but it is worse if someone is embarrassed to say that their child died of AIDS.

Individual therapy is available through psychologists. Group support is a good way to share the experience. The people who were helping the family at home are also a source of support if they were able to create some links with family members.

4.6 To which extent are resources available?
HIV positive persons are not always well informed about the resources available if they are not diagnosed in a specialized clinic or hospital. Despite the fact that AIDS is now well known, not all doctors take the necessary steps to make sure that the infected person has a supportive social network. On the other hand, even if the family is well informed about the resources, they have to work hard to obtain services. Many phone calls and meetings are required. Organizing home care services is a lot of work which is easier if the families work with a specialized CLSC. But once again it is not easy to know where to obtain all the resources are. Publicity is mainly done inside the health network. For example, community services are publicized in clinics or in CLSCs. So the population in general has limited knowledge of those resources.

One of the most important problems in their search is the fact that when the infected person locks for available resources, they can not always identify themselves. They can't leave a message or give personal information. For example, if a mother is the only person who knows about the illness of her child, she will only be able to make phone calls when her husband is not there. The same applies to meetings: she will only be able to attend if she can find a good excuse justifying her absence from home.

4.7 Are resources used?
When families accept the infected person, they do not often use the available resources. Even though they may also need less psychological support, they still need information concerning medicine. The problem of confidentiality, however, limits the utilization of resources.

4.8 Who uses the resources?
Women are the main users of the resources. As discussed, the mother is the one who is most present while fathers are less present: Quebec culture makes it difficult for men to express their need for help.

Generally women are heterosexual: when they seek help, they do not want to be with homosexuals, not because of prejudices, but because their experiences are different. Because the homosexual community was the first victim of AIDS, the heterosexual AIDS community is often forgotten by support services. It is hard for a HIV positive man to find support when he is heterosexual or bisexual.

4.9 In the regions
We can hardly find more than one organization in each region of the Province of Quebec. Montreal is really the AIDS center. Some families meet obstacles because the health care personnel do not have equal knowledge of AIDS as those in Montreal. Having to travel long distances complicates the experience. Regions are so vast that people need to drive many kilometers to reach the hospital.

The reputation of the family in the region is very important to preserve because there is no anonymity. In order not to be identified, few people participate in support groups. This is why individual help is more popular.

4.10 Determmants of integration
There are no socio-economic factors determining the extent to which an infected person will be accepted by his or her family. It is, however, possible to analyse the influence of two variables: education and economic status.

In more educated groups, the knowledge of AIDS is more extensive. But education does not guarantee the emotional capacity to accept such an illness and inevitable death. So, for an infected person, it is not necessarily easier to deal with illness even if the family members are educated.

Richer families have less difficulties to cope with the cost of medicine and private health services.
This represents fewer worries for the family; but it sometimes means that family will be less
involved and will lack interest in the infected person's problems. People who are well known (like
doctors or lawyers) will sometimes hide the sick person to protect their reputation. On an
emotional level the disclosure of this disease is often worse because, in these groups, people often
think that it will never happen to them.

Economically disadvantaged groups are sometimes more aware of the resources available, which may compensate for their financial problems. On the other hand, homosexuality is not very well accepted, AIDS is often seen simply as one more problem...

These are the only variables which may influence their reaction to AIDS. Money and education do not dictate the capacity to cope with illness and death.

5. Recent changes in the health care system
The budget cuts made to the health care system in order to erase the provincial deficit had an impact on infected people. First, overnight stays at the hospital stay are for a shorter period of time. The families must take on the responsibility of caring for the infected person sooner. Social workers and community organizations are getting more demands for support. It is a heavier task to be accomplished with less money than at the beginning of the epidemic.

A growing number of people have difficulties paying for their medicine. The special governmental programs to help HIV positive people to pay for medicine have been abolished. A person may be required to pay between $1000 and $1500 per month ¹⁰. For people without private insurance, the cost is enormous. But even if they have insurance from their workplace, people are afraid to claim reimbursement for their medicine because this may breach confidentiality. Many infected people lose their jobs under these circumstances. Under such conditions, families and friends must play an important role.

5.1 Treatments
The evolution of medicine for AIDS is growing rapidly. It is a real source of hope. But this may be misleading: AIDS is still fetal and no definitive cure has been found. So far, medicine only prolongs the lives of infected people. Also, not everybody reacts positively to new medicine. Some are very sick and no appropriate treatment can be found for them. At a psychological level the possibility of death is still there. It is hard for both the infected person and their family.

New treatments have changed the intervention of some community services because AIDS is not as often a crisis situation. Science has also changed its perspective on AIDS. Scientists have begun to consider this illness as a chronic disease (like diabetes). This new status for AIDS may eventually change the financial amounts allocated to governmental programs for AIDS.

6. Provincial & Federal policies on AIDS
In June 1997, the Government of Quebec initiated a five-year program in a fight against AIDS. The budget of this program is 19 million dollars:

- 7.1 million for the prevention and surveillance of AIDS;
- 5.6 million to take care of the HIV-AIDS people in the health care system;
- balance for research and health-cure assistance.

This new phase has three main objectives: (1) health promotion and prevention, (2) power redistribution, (3) reoorganisation of the services in the context of general budget cuts in the health care system of the province. The Government also wanted to develop home care services and other resources in every region of Quebec. Few concrete measures, however, were announced, so it is not possible to say whether families of AIDS patients will be taken into consideration.

This government program began its fourth phase in 1997, the first one started in 1989. The Federal Government, at times, allocates money to support Provincial Government programs and initiatives (even if health is a provincial jurisdiction) that decided to stop providing money for AIDS. This decision has created important difficulties for community organizations: they must find money elsewhere and some may simply have to close.

Conclusion
There is no family-oriented philosophy in the case of AIDS. Most of the resources are for the infected person. But the holistic approach of many services help the HIV positive person and may, directly and indirectly, help family and friends. This holistic approach may be the best way for facilities to properly adjust themselves to the budget cuts, the new medicines and the new group of infected heterosexual people.

AIDS is seen as a real « test » for families. On one hand, this illness may reinforce the strong links already existing in a family. But AIDS may also increase the tension in a disfunctional family which has difficulties accepting homosexuality, prostitution, and drug addiction. AIDS also invokes fear of death.

The best way to prevent AIDS is through education. We all must remember that the family is the best place to talk about safe sex and that government and other resources can only complement this very important social unit.

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1. This is an unofficial translation of the french version. Thanks to Judith Mitchell, Nicole Sigouin & Sonia Kesik-Mitchell for reviewing the English version. Their collaboration was very much appreciated This version also provides new information concerning prostitution. In addition, we want to thank the organizations of Stella and Passage for their collaboration.

3. Confidentiality is a very important issue because AIDS is linked to many taboos and, as will be seen breach of confidentiality may have dramatic consequences.

4. In order to take care of someone who is very sick you may have to do renovations in your house or appartment: special beds or adapted toilets.

6. Even if homosexuals are in all socio-economic spheres of the society, in Montreal (like in the majority of metropolitan areas in America and Europe) there is an area where they can live more "freely". This area is open to everybody, but homosexuals are able to express their own sexual orientation. It is mostly homosexual men that occupy this area, lesbians being more dispersed. There is less of a need for a lesbian area partly because in general we are less suspicious when we see women showing affection to each other Unlike other societies, it is rarer in North America to see two men holding hands or hanging shoulders. Specialized ressources for HIV positive people find their origins in this area. Nowadays, however, it is possible to find help eveywhere.

7. It is not possible to evaluate the number of sex workers in Quebec, mainly because of the illegality of solicitation and the clandestine character of the activity. Estimates indicate that in 1984, 3000 adult prostitutes were working in the Montreal region and 100 in Quebec city region. Numbers are even more striking in the case of minors ( less than 18 years old): around 5000 young people are prostitutes in the Montreal region and between 500-800 in Quebec city region. In big American cities, authorities consider that one young person out of 100 engages in this profession. Statistics for other regions are not available because police interventions is not very active in this area.

8. In Montreal, the red light district used to be downtown. But increasingly prostitutes are working in different areas of the city, in places where they were not seen five years ago. They do not always work in groups like before. Brothels in Montreal are illegal and that law seems to be respected.

9. In Quebec, people without jobs may receive a minimal living allowance through the welfare system, a Provincial government service.