|Aids Home Care Handbook (WHO, 1993, 178 p.)|
|Part I: Teaching Guide|
|Chapter Three: Living positively with AIDS|
Counsellors are people who are trained to help others to understand their problems, identify and develop solutions, and make their own decisions about what to do. Counselling involves being with them, listening to them talk about their problems and fears, helping them to increase their own self-esteem, and when necessary giving correct and useful information based on what they need to know at that point in time.
When Yulia went back to the clinic she was counselled.
Many of the skills needed for counselling are similar to those needed for teaching (see Chapter One), because they are skills of effective communication.
In the last section you saw the reactions people might have on learning they have HIV/AIDS. Go back and look at all the faces showing those reactions. No matter how much you care for people you cannot change their feelings. Only they can do that. But by offering your time and just listening, you are telling them that you care and that their feelings are normal and accepted. By allowing them to talk about their feelings, you give them the opportunity to understand and overcome their negative feelings. This helps them begin to make choices and act on decisions. A feeling of empowerment or hope, of having a choice and being able to act, is strong therapy for someone who is feeling helpless and unworthy.
Counselling is a skill that requires effective training to develop. There may be times, if you are working with people with AIDS and their families, when you believe more skilled counselling is needed to deal with serious psychological issues. At these times you may want to refer the sick person for help elsewhere, from people who are experienced in providing such support, perhaps in government or voluntary services or in religious or spiritual organizations.
However, there are skills used by counsellors which all of us can use to help each other during the times we are talking together. Many health care workers and people like Yulia are being trained to improve their communication skills, particularly in relation to AIDS. Those who are in contact with someone with AIDS, or with anyone who is experiencing emotional pain, can do a lot to help them and make them feel better by using simple counselling techniques.
¨ Think of a time when you felt badly about something and how, after talking with someone else - a friend, a family member, a health care worker, a pastor - you felt better. What did that other person do that "helped" you?
Often the answer is:
"Nothing, he just listened and sat with me while I told him everything".
"She was just kind and didn't judge anything I said. She helped me to understand what was really bothering me and what I could do".
These answers tell us what some of these effective communication skills are:
· listening actively
· trying to understand what the person is feeling
· asking good questions
· respecting people and their feelings, and not telling them to change
· being non-judgemental
· providing correct information.
All of these things tell a person, "You are not alone - I am with you". This is so important to someone who is afraid of being rejected and who might feel like a failure.
The most common mistake you can make when trying to "help" people who are experiencing emotional pain is to try to change their feelings. You don't want them to be hurt and perhaps the issues they are confronting scare you too.
To distance yourself from this pain you may:
· deny their emotions, for example by saying, "You shouldn't feel that way"
· give advice, such as "All you need to do is... and things will be better".
These types of messages are a "mistake" because they tell people:
· that they are not respected or capable - that they cannot manage their own problems
· that you are not interested
· that you are uncomfortable with the pain they are experiencing.
Because you want people to feel better or to be "cured" of the difficult feelings they are experiencing, you may try to convince them to feel differently. But by doing this you are telling them that what they are feeling is unacceptable and that they are failing you somehow unless they change. This only adds to their feelings of self-rejection and isolation.
Listening is one of the most important parts of good communication. This means you have to be silent sometimes. Let the conversation move at the other person's speed rather than at yours.
Asking good questions comes from good listening and is part of helping someone see another point of view. The questions you ask should always come from your listening. When you listen you are not just hearing words, you are hearing the feelings behind the words and the person's own view of their situation. The questions you ask can help both of you gain a better understanding of the situation.
Another important way you can help is by being able to give consistent and accurate information. The ability to say you do not know an answer but will try to find one is always better than making an answer up (see Chapter One). Telling the truth establishes the trust and the respect needed to build a helpful relationship.
The trust you earn means you must guard the privacy of the information shared. Never gossip or break this trust. Breaking trust tells a person:
· they are not worthy of respect
· it was a mistake to seek help or share their feelings.
Because of this, they may not seek the help they need in the future.
There are no easy answers to the difficult questions that are asked by those with AIDS. You cannot always have the "right" answer. Using truth and your ability to care are the only things you can be certain are "right". Your own discomfort and fears will be part of your attempts to help. Sometimes you will need to pay attention to these feelings and get help for yourself. Perhaps this comment from a woman who described the counselling she received says it all equally well:
"He looked me in the eye and said 'I don't know what I would do in your situation, except I would be scared'. I felt, suddenly, so much better. I was scared but I wasn't alone somehow."
When you are caring for someone you must watch your own reactions to the person you are trying to help. If you find yourself becoming impatient or angry these are signs that you are having trouble dealing with your own emotions and are less likely to be helpful to the person. You may be thinking, "He just doesn't seem to be able to face facts" or "She won't do anything to help herself". Your needs as a care-provider cannot be ignored but they should not be a burden to the person who is experiencing the grief of his or her own condition. You may need some special time to address your own concerns in private with counsellors, pastors or other health care workers. You may need help in understanding the sick person's needs and fears.
As AIDS worsens and a person becomes more and more ill, very often worries about physical health are outweighed by practical and emotional worries about money, housing, disability, change in lifestyle, family and other relationships, and the approach of death. You can help by offering practical help in planning for the future and by giving spiritual support, for example by helping someone strengthen or re-establish their religious affiliation (see Chapter Seven).
Yulia and her child going into the homes of other people with AIDS gave a very important message in the community.
Often the help needed in caring for someone with AIDS and for those who love them is very simple. Offering to help with chores, bringing favourite foods, watching over children and playing with them, telling stories, singing songs, sharing prayers - these are simple acts with strong messages of hope and belonging.
Everyone needs the love and help of those around them. Isolation from other people is frightening and it hurts very deeply when it seems the love of others has gone and you are rejected. A clear understanding between those with AIDS and everyone around them can do a great deal to help people face this disease compassionately and rationally.
¨ What did Yulia learn in her training to help her care for herself and for others with AIDS?
First she was told that it is currently believed that all people with HIV infection will go on to develop AIDS. Modern medicine and traditional healers do not yet have a cure for AIDS. But many of the infections that come with AIDS can be treated and many symptoms can be dealt with using simple medicines and proper care. Most importantly, Yulia was taught about how to live positively with AIDS.
She learned that if you have HIV or AIDS, you should try to keep strong. This means you should:
· eat a good diet whenever possible, including food that is rich in proteins, vitamins and carbohydrates
· stay as active as possible; exercise helps prevent depression and anxiety
· rest when you are tired and get enough sleep
· continue to work, if possible
· stay occupied with meaningful or at least distracting activities
· give both physical and emotional affection
· meet as often as you can with your friends and family
· talk to someone about the diagnosis and the illness
· seek medical attention for health problems and follow the advice you are given - this includes taking steps to prevent other infections.
If you are caring for children or infants with HIV/AIDS you should make sure they receive immunizations for other diseases.
And you should avoid:
· other infections - including further exposures to HIV; each infection you get weakens the immune system further making you susceptible to subsequent infections, which makes your immune system weaker still, and so on
· using unprescribed medicines - certain medicines can have side-effects that may be particularly harmful if you have AIDS
· isolation - your friends can do a lot to help you keep active and feeling positive; do not shut them out of your life.
Yulia was taught about caring for people with AIDS at home.
She learned that there are two issues that are of great concern to people with AIDS and their families. The first is how to prevent HIV transmission from the person with AIDS to anyone else in the home or the community. The second is how to maintain a safe environment that does not expose the person with AIDS to unnecessary infections.