**2. Psychosocial responses**

People living with HIV/AIDS (PLWHA) feel uncertainty and they have to cope with the situation. Feelings of insecurity have its origin in the fear from the upcoming future and the people focus on their families and their fob. They feel even more uncertain and are more concerned because of the quality of life and life expectancy as well the treatment´s outcome and the reaction of the society. All concerns are unpredictable, and therefore they should be discussed. Above all, positive thinking and faith of is recommended.

The situation is very special for children, who have lost their family and home. The HIV positive child must react to this uncertainty and make several decisions to adapt to the current situation. Even if it seems, that the child does not react at all, it can be the very adaptation to the illness by denying it. People begin their adaptation process from the day they learnt about it. Their daily life reflects the tension between uncertainty and coping with

Psychosocial Aspects of People Living with HIV/AIDS 177

relatives of people with long-term illness, in terms of expected death. HIV/AIDS is a fatal disease. Some people survive ten years, another few months from diagnosis. As the disease gets hold of their body, they lose control over their life. PLWHA tend not to care anymore about things which made them happy, they submit to their fate, they do not see any hope

*Hopelessness* and *helplessness syndrome* includes elements of giving up and leaving. The

• The subjective feeling of reduced ability to deal with the situation ("it is beyond my

• Tendency to revive and re-construct former deprivations and failures. (Simek, 1993 as

Small children, since most of them do not know about their diagnosis, experience their state very differently. They still have a bit of life joy. In their ignorance, purity and their nativity they can spend a nice childhood, in the case, if somebody takes care of them and provides

Diagnosis of HIV/AIDS infection often brings feelings of *guilt* from the possibility of infecting the other people or from the previous way of life which led to the infection There is also a feeling of culpability of what disease brings to people in one´s own family, especially children. Previous events that caused pain or sadness of others remained unresolved; they

People living with HIV/AIDS, who have to cope with their complicated destiny, very often lose rapidly their *self-esteem.* Rejection of colleagues, relatives and loved ones and often people can very quickly lead to loss of self-esteem and social identity, which leads to the feeling of one´s own worthlessness. This condition can be enhanced by worsening of symptoms accompanying the disease, e.g. facial disfigurement, deteriorating body, loss of

Self-esteem is an ability to appreciate oneself and treat oneself with dignity and love. Anyone who is loved is willing to change. Human beings can grow and change throughout their life." The behaviour is the result of managing well. Coping is the expression of the level of self-evaluation. In coping the way how a person perceives oneself is reflected and one´s own relationship. The problem is not the problem itself, but how one handles it. It can be deduced from that fact that the increase of one´s self-esteem and self-evaluation can lead to

Feelings of anxiety in PLHWA can be detected very soon which reflects the continuous

• Painful feeling of helplessness and hopelessness face to face to the situation,

• Feeling of danger and decreased satisfaction from relationships with others, • Loss of continuity of the past and future, a reduced ability to hope and trust,

can reoccur and cause the patient even greater feelings of wrongdoing.

and wait for the death to come.

cited in Bastecky, 1993)

**2.3 Guilt and self-esteem** 

strength"),

survival mechanism includes the following:

them with their basic needs as well as health care.

strength as well as loss of control over one's body.

well managing the life´s situation of these children.

• social, professional, familiar and sexual rejection,

uncertainty associated with the disease. This state results from:

**2.4 Anxiety disorder and depression** 

• short and long-term prognosis, • risk of infection with other diseases, • risk of infecting other people

the situation. It is the tension, which raises a lot of *psychosocial responses* of bigger and smaller intensity.

#### **2.1 Fear and loss**

*Fear* of HIV/AIDS is closely associated with fear of our own death, which belongs to the most basic of fears. It is the fear which most of us are trying to fight with by constantly running away from the idea of self-termination or by inventing a series of comforting ideas. Escape and rationalization will help only to cultivate the fear of death. Above all, people have to be settled with self-extinction, with own death and thus perhaps would help those who just need help in the process of dying.

In countries with high rate of infected people are found amongst doctors and other healthcare staff. PLWHVA are pushed to the margins of the society, and are isolated. They are forced to leave their job, they, lose their homes, often their family and friends. They are not given adequate health care and by the provided health care they are confronted with rejection. All of this happens because of an illness which cannot be transmitted by common contact. This attitude of professionals who are unable to overcome prejudices and refuse to provide health care is a deep misunderstanding of their mission. The reasons for this kind of handling is fear of being infected with HIV and, ultimately, fear from death itself. (Frensman, 2000)

Another aspect associated with HIV/AIDS is *a loss*. People in the developed stage of AIDS are worried because of the loss of their life, their ambitions, physical performance and potency, sexual relations, loss of their position in the society, financial stability and independence. With the increasing essential need of systematic tendency they lose their sense of privacy and control over their lives. Perhaps the most problematic issue is the loss of confidence. It may affect the future, anxiety originating from a relationship with a loved one or caregiver and negative reactions from the society.

For many people finding out about their HIV/AIDS status it is the first opportunity, to realize their mortality and psychological vulnerability. They face social isolation due to the inability to perform all daily activities which they used to do. Relationships within the family change more frequently, one loses their colleagues and the attitude of acquaintances and friends changes frequently as well. Many are afraid of the loss of memory, their concentration and ability to make decisions.

Death of a relative, who dies of a deadly disease, presents an extreme burden for each human being. He tends to surrender the pressure of the situation, which seems to be insolvable. Mental failure is accompanied by significant behaviour, changes in physiological and psychological processes in the body, which have sometimes permanent effects on health. This persistent extreme burden leads to disruption of relationships with the social environment.

#### **2.2 Grief, hopelessness and helplessness syndrome**

*Grief* is another strong emotion that is closely linked to the loss. The HIV/AIDS positive patients often dive into sadness because of their loss they experienced or the one they expect. Natural sadness results from unfulfilled dreams and plans and from the nearness of an inevitable end. The patient may lose the sense for relationship with parents, children, friends or life partner, as well as with other people. In connection with the impending death of a loved one there is mentioned a so called "anticipate grief", which occurs by the closest

the situation. It is the tension, which raises a lot of *psychosocial responses* of bigger and

*Fear* of HIV/AIDS is closely associated with fear of our own death, which belongs to the most basic of fears. It is the fear which most of us are trying to fight with by constantly running away from the idea of self-termination or by inventing a series of comforting ideas. Escape and rationalization will help only to cultivate the fear of death. Above all, people have to be settled with self-extinction, with own death and thus perhaps would help those

In countries with high rate of infected people are found amongst doctors and other healthcare staff. PLWHVA are pushed to the margins of the society, and are isolated. They are forced to leave their job, they, lose their homes, often their family and friends. They are not given adequate health care and by the provided health care they are confronted with rejection. All of this happens because of an illness which cannot be transmitted by common contact. This attitude of professionals who are unable to overcome prejudices and refuse to provide health care is a deep misunderstanding of their mission. The reasons for this kind of handling is fear of being infected with HIV and, ultimately, fear from death itself.

Another aspect associated with HIV/AIDS is *a loss*. People in the developed stage of AIDS are worried because of the loss of their life, their ambitions, physical performance and potency, sexual relations, loss of their position in the society, financial stability and independence. With the increasing essential need of systematic tendency they lose their sense of privacy and control over their lives. Perhaps the most problematic issue is the loss of confidence. It may affect the future, anxiety originating from a relationship with a loved

For many people finding out about their HIV/AIDS status it is the first opportunity, to realize their mortality and psychological vulnerability. They face social isolation due to the inability to perform all daily activities which they used to do. Relationships within the family change more frequently, one loses their colleagues and the attitude of acquaintances and friends changes frequently as well. Many are afraid of the loss of memory, their

Death of a relative, who dies of a deadly disease, presents an extreme burden for each human being. He tends to surrender the pressure of the situation, which seems to be insolvable. Mental failure is accompanied by significant behaviour, changes in physiological and psychological processes in the body, which have sometimes permanent effects on health. This persistent extreme burden leads to disruption of relationships with the social

*Grief* is another strong emotion that is closely linked to the loss. The HIV/AIDS positive patients often dive into sadness because of their loss they experienced or the one they expect. Natural sadness results from unfulfilled dreams and plans and from the nearness of an inevitable end. The patient may lose the sense for relationship with parents, children, friends or life partner, as well as with other people. In connection with the impending death of a loved one there is mentioned a so called "anticipate grief", which occurs by the closest

smaller intensity.

**2.1 Fear and loss** 

(Frensman, 2000)

environment.

who just need help in the process of dying.

one or caregiver and negative reactions from the society.

**2.2 Grief, hopelessness and helplessness syndrome** 

concentration and ability to make decisions.

relatives of people with long-term illness, in terms of expected death. HIV/AIDS is a fatal disease. Some people survive ten years, another few months from diagnosis. As the disease gets hold of their body, they lose control over their life. PLWHA tend not to care anymore about things which made them happy, they submit to their fate, they do not see any hope and wait for the death to come.

*Hopelessness* and *helplessness syndrome* includes elements of giving up and leaving. The survival mechanism includes the following:


Small children, since most of them do not know about their diagnosis, experience their state very differently. They still have a bit of life joy. In their ignorance, purity and their nativity they can spend a nice childhood, in the case, if somebody takes care of them and provides them with their basic needs as well as health care.

#### **2.3 Guilt and self-esteem**

Diagnosis of HIV/AIDS infection often brings feelings of *guilt* from the possibility of infecting the other people or from the previous way of life which led to the infection There is also a feeling of culpability of what disease brings to people in one´s own family, especially children. Previous events that caused pain or sadness of others remained unresolved; they can reoccur and cause the patient even greater feelings of wrongdoing.

People living with HIV/AIDS, who have to cope with their complicated destiny, very often lose rapidly their *self-esteem.* Rejection of colleagues, relatives and loved ones and often people can very quickly lead to loss of self-esteem and social identity, which leads to the feeling of one´s own worthlessness. This condition can be enhanced by worsening of symptoms accompanying the disease, e.g. facial disfigurement, deteriorating body, loss of strength as well as loss of control over one's body.

Self-esteem is an ability to appreciate oneself and treat oneself with dignity and love. Anyone who is loved is willing to change. Human beings can grow and change throughout their life." The behaviour is the result of managing well. Coping is the expression of the level of self-evaluation. In coping the way how a person perceives oneself is reflected and one´s own relationship. The problem is not the problem itself, but how one handles it. It can be deduced from that fact that the increase of one´s self-esteem and self-evaluation can lead to well managing the life´s situation of these children.

#### **2.4 Anxiety disorder and depression**

Feelings of anxiety in PLHWA can be detected very soon which reflects the continuous uncertainty associated with the disease. This state results from:


Psychosocial Aspects of People Living with HIV/AIDS 179

tactfully enough. Anger can sometimes escalate into self-destruction: suicide. Aggression is one of the most frequently reported reactions in frustrating situations. In the frustrating situations, an individual may focus his anger, remorse, indignation, outrage, hostility on other people that are considered as suitable object. There is another possibility, presented by the concept of self-accusation, which the aggressive reaction are aimed at oneself. (Bratska,

There is an increased risk of *suicidal attempts* for HIV positive people. They may see the suicide as a way out from pain and difficult situation, out of their shame and grief for their

Suicide may be active (e. g, causing a fatal injury) or passive (planning or preparation of such a situation, which could result in fatal complications of HIV/AIDS). (Yelding, 1990) HIV positivity presents a risk factor, particularly amongst adolescents. There are significant complications in the development of personality in adolescence age and it can be perceived as an unacceptable problem. Suicidal behaviour is associated with a wide range of mental

A situation in which one must face loneliness, loss of control and death, can lead to *spiritual questions* and seeking assistance in the faith. Concepts such as sin, guilt, forgiveness, reconciliation and tackle, may become subjects of spiritual and religious discussions. Similar moments become topical for many HIV positive patients. The cause of many emotional and psychic problems is presented by various infections, difficult situations and difficult periods of exhaustion. Even greater impact on the HIV positive person, however, presents the rejection of one´s own family or friends and one is separated from the society and pushed

Many people believe that only religious people have spiritual needs. But non-believers begin to deal with questions about the meaning of one´s own life exactly during their illness and when they suffer. Everybody needs to find out, that the life has had had and still have some meaning. Everybody needs to deal with things, which are hard for him and which are

Sometimes the suffering radically changes the actual life and it often affects moral values of

When talking about the spirituality of children, many may argue that children´s ability of abstract thinking needed for understanding of religion is not developed and that they cannot understand the concept of God Despite the developmental perspective that generally criticizes the view of children's spirituality, we must acknowledge the fact that children are the pilgrims, who are trying to the meaning of world and the meaning of their own life. Of course, the initial views of spiritual values and experiences children may experience in different ways, depending on whether they are raised in religious families, if they regularly experience religious rituals and to what extend are they raised in a religious way. Every child explains these events introspectively to oneself. It is perhaps not so important, at what age, the child begins to understand and express spirituality, but it is important to create room for a child´s questions and to supply her or him with the answers. (Dane & Levine,

Any death, especially death of a parent brings many spiritual issues. The child asks: "Why did he / she die?" "Why is this happening to me?" "Who will take care of me?" All these

disorders, HIV positive children and adolescents suffer primarily from depression.

2001)

aside.

2002)

unchangeable.

people. (Dobrikova, 2005)

loved ones.

**3. Spiritual aspects** 


*Anxiety disorders* are often accompanied by characteristic somatic, physiological, and autonomic, biochemical, endocrinal and behavioural changes. The fact is that so far there is no possibility to cure HIV infection, leading to the feeling of helplessness, loss of personal control, which may be associated with a resulting depression.

*Depression* can have many causes. An affected person may get the feeling that the virus takes control over his body. Just the fact that a close person died of AIDS, together with not existing the possibility of planning one owns long-term future has a negative impact on one´s psychic condition.

In connection with the depressive syndrome there are several types of depression, i.e. exogenous, endogenous or neurotic depression. By the *exogenous depression* there have been reported such problems as the experience a sudden loss caused by the death of a loved one. There is expected an internal biological ability, which causes depressive psychopathology regardless of external circumstances by the so-called *endogenous depression*. By the *neurotic*  depression there is an expected effect of long-term stress and frustration. This form is present in the condition of most HIV/AIDS positive orphans. The symptoms of depression are present in neurotic and anxiety disorders such as mixed anxiety depressive disorder and the disorder of adaptation. Depressive behavioural disorder is often diagnosed especially, in the childhood, within a mixed behavioural and emotional disorder. (Koutek & Kocourkova, 2003)

The prevalence of depressive disorders rates up to 40 to 55% by orphans with HIV up to the age of 10, up to 50 to 75% of adolescents who were given professional help. (Rubinstein, 2001)

Depressive syndrome in these children is associated with an extremely sad mood, slowing of psychomotor speed, sleep disturbance and suicidal thoughts. A typical symptom is presented by increased irritability, behavioural problems with elements of aggression.

#### **2.5 Denial, anger, aggression and suicide attempts**

Some people react to news about their HIV/AIDS status by denying it. For some of them, such refusal may present a constructive way to handle the shock of the diagnosis. However, if this condition persists, the denial can become unproductive, because these people refuse also the social responsibility associated with HIV positivity. This reaction is typical for children, in the case of the death on a parent.

*Anger and aggression* are typical aspects which accompany people in situations of bereavement. Some individuals become angry and aggressive. They are often very upset about their fate. They continuously have the feeling, that they are not treated decently and tactfully enough. Anger can sometimes escalate into self-destruction: suicide. Aggression is one of the most frequently reported reactions in frustrating situations. In the frustrating situations, an individual may focus his anger, remorse, indignation, outrage, hostility on other people that are considered as suitable object. There is another possibility, presented by the concept of self-accusation, which the aggressive reaction are aimed at oneself. (Bratska, 2001)

There is an increased risk of *suicidal attempts* for HIV positive people. They may see the suicide as a way out from pain and difficult situation, out of their shame and grief for their loved ones.

Suicide may be active (e. g, causing a fatal injury) or passive (planning or preparation of such a situation, which could result in fatal complications of HIV/AIDS). (Yelding, 1990)

HIV positivity presents a risk factor, particularly amongst adolescents. There are significant complications in the development of personality in adolescence age and it can be perceived as an unacceptable problem. Suicidal behaviour is associated with a wide range of mental disorders, HIV positive children and adolescents suffer primarily from depression.
