“AIDS in the family – Lithuanian and European perspectives"

Psychological help to the people with HIV
People with HIV face a lot of psychological problems. Along with everyday troubles specific problems related to this infection occur. Awareness alone that you are carrier of dangerous and lethal virus is a bard stress factor impacting the major functioning levels of a human being: physical, psychological-emotional, social. A variety of pain, stomach upset, skin ailments and sleeping disturbances may appear on the physical level, oppression, despair, anger, low self-esteem - on psychological-emotional level, communication problems with family members and close people, self-isolation, refuge of any activity - on social level. Infected person should get a complex help aimed to reduce the ailments on all these levels.
Information about infection provokes a personal crisis with damage of person' s believes in basic values, painful looking for answers to existential questions: will survive and do somebody needs me? Am I of any value? What is a sense of my life? Common strategies for overcoming anxiety and death fear are not enough. All resources of personality development are used to overcome the crisis. Every person in crisis desperately needs the presence and availability of other people. Swiss scientist Elizabeth Kubler-Ross sets six phases of reaction to a crisis apart. Now I am going to overview those. Along with every phase I will discuss the ways of help requested at that moment.
1. Shock phase.
Reality drifts away. A person may seem to be calm externally but deal with chaotic feelings inside. A patient may not recall this moment at all after exhaustion of the crisis. The shock phase most often turns on when a person first learns that he is HIV infected. It is very important not to leave him alone, stay with him, talk to him calmly, not criticise, not object, and stimulate him to speak. Medical worker should spare more time to a patient while letting him know the diagnosis, to make sure he understood the test result, to answer all the questions, to find out what he is going to do next few hours, and to discuss shortly possibilities of support.
2. Denial
Person recovering from shock cannot believe all this happens to him. "It's impossible, this is a mistake" - such sentences are often heard by people communicating with HIV infected person. It happens that patients require new tests under different names, and control the medical workers in this way. Denial is a temporary defence mean giving time to accumulate both physical and psychic energy needed to cope with anxiety arisen because of possible life threat. Total denial happens only in rare cages. In most of cases it is alternated with deep awareness of situation, when infected person entirely understands and accepts the truth. Denial means that a person does not want to talk about himself. While talking to a patient, it is purposeful to clear his needs, his readiness to accept reality and his capacities of coping with it. Denial phase can be dangerous in cages of total denial of long duration and in cases of patient' s refusal to treatment regime and doctor' s recommenations.
3. Anger
The shock is followed by a period when it turns to be impossible to deny. Denial is replaced by anger, rage and discontent. The infected person asks himself and other people: “Why me? What have I done? Am I worse as others?" Anger is expressed in all directions. It can be directed towards close people, medical workers, and authorities. It can be expressed not only through discontent and complaints but also through anger projection to the people around. On this phase the patient will insist that all are bad, nobody knows anything, nobody wants to help and everybody does harm on purpose. Both the close people and personnel have problems in dealing with the anger outbreaks. It is complicated to not personally react to anger, to understand that, basically, this anger is not related to anger objects. The problem is hidden other where. Anger is very natural in this case. Obviously, everybody would be angry seeing that all the life achievements are in danger. Tolerance and empathy are very important on this stage. Release would come after one will listen to patient' s accusations, allows him to be angry, and reacts calmly to his anger without hostility. If possible, you should help a patient to understand the real cause of his anger.
4. Negotiation
Attempts to make a deal and to change situation follow the shock, denial and anger. The patient promises to change his behaviour, to do a job, to be good in case he will recover and will not suffer any pain. Mostly they try to make a deal with God, same people do not have concrete addressee. It is extremely important to listen to these considerations. Often they are related to experienced feeling of guilt. Infected person is feeling guilty because of his behaviour, treats HIV as punishment for his life. Feeling of guilt is usually strongly expressed; it results into depression, and destructively effects person' s life. Unproductive defence might occur: narrowing and limitation of activities, pleasure rejection, and belief that those self-limitations would be paid off. Help should be directed towards reduction of feeling of guilt and towards better awareness that infection is not a punishment. Experts dealing with the patient should stimulate and support his choice of productive and full-fledged life.
5. Depression
Along with awareness of diagnosis, sadness and fear for future, fear to be rejected and be alone appears. Low self-esteem often deepens depression. Because of widely distributed glorification of human power, unlimited health and strength, a person, facing potential lethal infection, takes it as personal defeat, feels weak and mean, worse than others. On this stage it is important to let a person express his sadness, to talk. You should not try to calm him, to encourage him be optimistic, to think about funny and pleasant things. Such attempts prove our own fear and helplessness in front of despair of other person. Sadness and desperate help to accept the situation. Patient' s fears should be cleared up and necessary help provided to fight those fears. The patients are afraid of consequences of infection: possible diseases, loneliness, and reaction of people to his disease. Usually, depression highly decreases after solving the questions of real concern and finding the ways to assure medical help, financial means, communication circle, and support to patient' s close people after he will not be able to care for them.
6. Acceptation
If a person had enough time, if the necessary help was provided, and, which is most important, if he was not disturbed, he reaches condition when diagnosis and its awareness does not stimulate neither anger, nor depression anymore. Release occurs. Self-esteem returns, interests and wish to communicate revive.
Paradoxically, personality and life of a human being may change very positively when confronting the incurable disease. Quality of life improves especially in those patients that are able to re-find their sense and value of life. These patients have tried to use their time productively, to make use of arising opportunities. It is important that doctors, psychologists and psychotherapists collaborate with each other while providing help to the HIV infected people, and involve family members and close people into this process, to provide them with necessary information on physical and psychological aspects of HIV, support them. While providing psychological help, it is important to not disturb the person with HIV during all the crisis phases, and not to prompt him. You should be near and show your concern, your readiness to help. These stages in position change of the infected person are defence mechanisms helping to survive under hard circumstances. They may last longer or shorter, exchange each other or exist aside. The only hope remains on all the stages. Infected people hope to survive and be cured during all the stages. This hope helps to cope with pain, gives spiritual strengths, and helps to see a sense in the suffering, gain belief that the pain has its reason. To support this hope is our mutual obligation and privilege in dealing with HIV infected people. Privilege, because we have a chance to improve our knowledge through being with these patients in this way.

Families living with HIV/AIDS

• A family facing HIV/AIDS needs social, psychological, medical help. The family experiences anxiety and uncertainty about the possible diseases progression, confronts complicated medical regime, pain and sorrow related to health loss and possible death of a family member.
• HIV/AIDS is more complicated as other chronic and potentially lethal diseases because of stigma related to HIV infection spread (e.g., sexual activity, intravenous drugs). Therefore the families are apt to self-isolation from society and community trying to protect itself and their children from negative actions and reaction of other people.
• A lot of psychological and emotional problems that have people with HIV and AIDS or HIV/AIDS affected ones, and scarce environmental support may lead to psychological disorders (e.g., depression, post-traumatic stress and anxiety). Behavioural troubles start to develop (e.g., use of drugs and alcohol, non-attendance of school, inability to keep a job, delinquent behaviour, etc.). Children in the families with HIV/AIDS may experience developmental disturbances.
• People attributing their HIV infection to own risky behaviour, have a strong feeling of guilt, shame and anger. Such emotions are especially common in mothers that have infected their new-born. Besides, stigma related to HIV may lead to social isolation. The families often hide their positive HIV status because of fear of negative reaction and actions of people around. Isolation prevents the families from valuable social support in cage of troubles. Medical and social workers have to be aware of such the feelings and fears that their HIV status will get public resulting into avoidance of help.
• Pain, sorrow, anger and deterioration of physical health are typical to the families with HIV/AIDS. This may be an obstacle to the parents in providing consequent care for their children. After death of one parent, further family members may take over the care for the children (grandparents, aunts). These changes may provoke developmental problems, lack of effective surmounting mechanisms and strategies in the children and adolescents. Various reasons complicate proper parent's care for their children in the families with HIV/AIDS. Those reasons may be denial of own disease cruelty, and fear of the HIV status disclose in the community, and depressive states, etc. In these cases children may be deprived from reliable, caring role of an adult in the family or even experience violence at home.
• The barriers in strong compliance with the treatment regime are as follows: incomprehension of long-term impact, myths about treatment necessity and efficiency, mistrust of medical workers, conflicts with chosen living style, abuse of psychoactive substances, medication side effects. A need for education and psychological interventions occurs.

Main targets in providing help to a family with HIV/AIDS

• Decrease of stigma and discrimination that negatively impact adaptation in the community and society;
• Availability of social medical, psychological, and other required help to a whole family in the nearby of family' s location and not only in the biggest cities.
• Empowerment of the family who take care for a person with HIV/AIDS, sufficient knowledge on disease progression, nutrition and medication specificity, constant communication with the required service institution.
• Good knowledge on HIV/AIDS prevention of the family members.
• Engagement of the families with HIV/AIDS into the self-support network.
• Family advocacy to assure the human rights.

HIV/AIDS in penal establishments

• HIV infection in penitentiaries is directly related to the drug use.
• Families of inmates with HIV experience fear of HIV/AIDS, lack of knowledge and comprehension, stigma, etc. Family members have insufficient knowledge on drug dependence disease and on ways of living with it.
• It is the family that is able to provide the most solid support to the released inmates as compared to all the operating social and medical institutions. It is important to empower the family to live with HIV infected person and one with drug use problems, maximally reducing possibility for HIV spread.

Major tasks of helping the family that has a member with HIV/AIDS, current or former inmate:

• Accessibility of social and medical institutions in penal establishments and availability of services to released HIV-infected and drug-dependent people. Programmes should exist not only in the biggest cities but also in the counties. Programmes should provide support and help to families of HIV-infected and drug-dependent people.
• Continued psychological, social help, deep education on HIV/AIDS development, prevention and drug use diseases to the families.
• Empowerment of the family to motivate a person with dependence disease to engage into psychological social rehabilitation of drug users, a HIV-infected person - to seek for medical help, to attend the low threshold programmes.
• Wide family' s knowledge on drug use disease and its consistent to be able to notice early symptoms of a fleer-up of the drug use disease and to prevent the relapse, in cage a family member has competed a social psychological rehabilitation course and stays clean.
• To assure all the above tasks in families with HIV/AIDS.

HIV/AIDS prevention in young people

• Preventative work with children and young people aged 10-24. Improvement of youth's reproductive health and HIV/AIDS prevention is very important.
• Special attention should be paid to children and young people at risk. Special preventative programmes to be developed (targeted at children in foster homes, at those with psychiatric disorders, at delinquent children and youth, street children, etc.)
• Weak family role or its lack is characteristic to the social environment of the vulnerable children and youth. This means that their environment lacks the major protective factor - the family. If a child or an youngster belongs to so- called risk group, one can suppose that the family is not able to plant key values and proper attitudes of life. In this case the major measures should be included into programmes of social institutions and other organisations.

Major tasks in modifying attitudes and behaviour of the children and young people in HIV/AIDS prevention:

• Postponed sexual debut.
• Lower number of sexual partners in sexually active youth, attendance of contraception and reproductive health care services.
• Higher responsibility of youth related to reproductive health, respective knowledge and skills in the field of reproductive health, higher self-esteem, ability to make respective decisions, to foresee consequences of own behaviour, higher availability of social services and sexual education.

Scientific research
We have not yet any unambiguous answers on how the help and support to the families with HIV/AIDS should be provided most effectively and cost-effectively.
Scientific research in the following fields is required:

• Better understanding of required social, psychological and economic support to maximally reduce HIV/AIDS related suffering in the families.
• Most effective models of support and help to people with HIV/AIDS and their partners to maximally reduce episodes of HIV transmission-supportive behaviour.
• Effects of integrated prevention (HIV/AIDS along with STI, TB, family planning, mother-child health protection, etc.)
• Relation between life with HIV and productivity. What support and help should be provided to a person with HIV to sustain his maximal working productivity level.
• Factors supporting integration of the released HIV infected inmates in the family and society.

Governmental policy
Key directions and programmes of governmental actions to support families with HIV / AIDS are as follows:

• Preventative programmes directed to HIV / AIDS risk reduction in vulnerable families (general or special prevention, education, voluntary activity development, testing).
• Programmes supporting and helping the families with HIV / AIDS (life quality improvement, prolongation of productive life of a person with HIV , minimisation of infection spread in the family).
• Reduction of stigma and discrimination of the families with HIV/AIDS.
• Programmes stimulating and helping the community to support HIV / AIDS affected families (subsidies to or financing of education and health care, support to social security system, etc.)
• Programmes targeted at families experiencing loss of a family member (food, social guarantees, education, protection of human rights).
• All activity directions protecting and strengthening the family (reduction of unemployment, security of salary and social guarantees, reduction of a gap in urban/rural potentials, education, etc.)
• Activities supporting non-governmental and public organisations, and PLWHA (People living with HIV/AIDS) organisations.

 
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