SARPCCO Training: HIV/AIDS

Transcription

1 65 SARPCCO Training: HIV/AIDS MODULE 6 VOLUNTARY COUNSELLING AND TESTING Contributors: Senior Superintendent Gustav Wilson SAPS: Social Work Services

2 66 MODULE 6: VOLUNTARY COUNSELLING AND TESTING (VCT) Module Goal: To promote VCT as a best practice for police personnel and their dependants. Module Objectives: 1. Introduction 2. Understanding VCT 3. HIV testing 4. Costs and benefits of VCT 5. Disclosure 6. Strategies & resource for VCT 1 Introduction Voluntary Counselling and Testing (VCT) is an important tool in preventing and managing HIV/AIDS. It provides the information necessary to make informed decisions about the future and to protect one's own health and that of loved ones. In a region where resources are often limited, VCT is one of the most effective and common interventions. VCT facilities are offered by a range of organisations in most countries. 2 Understanding VCT Section objectives: 1. Explain what VCT is and how it differs from mandatory testing 2. Give three reasons why testing should be a personal choice 3. List the steps involved in undergoing VCT. 2.1 Voluntary versus compulsory testing Although there is almost universal acceptance of the idea that counselling and testing should be an entirely voluntary process, the reality is that many people are still compelled in a range of ways to go for HIV testing. Many insurance companies, for example, require an HIV test before processing an application (and some refuse to insure people found to have HIV). Some private and public institutions also screen new employees for HIV, require existing staff to undergo HIV tests in order to apply for job promotions or training opportunities, or demand that staff working in particular jobs undergo regular testing. In other cases, individuals may be compelled to go for testing by their partner, relatives, or friends. One may also have to undergo testing before undergoing surgical procedures. Is it ever justified to compel people to undergo testing? This is a controversial issue and the debate is unlikely to subside in the near future. However, human rights organisations, bodies representing people living with HIV/AIDS, many legal organisations, as well as global institutions such as the United Nations generally agree that people should not be forced into testing. Such institutions feel that such testing infringes on people's rights and is discriminatory. There may be times when it is hard to refuse to undergo testing. The crucial thing to remember is that you need to be ready. Test results can have huge psychological, emotional, social and physical implications that require the proper resources to cope with. Ultimately, it is your blood and your life and you need to decide what is best for you.

3 Basic facts about VCT Voluntary Counselling and Testing (VCT) is a process through which an individual receives counselling, makes an informed decision about being tested for HIV, assesses his or her personal risk for HIV and is motivated to reduce risky behaviour. Anyone who is sexually active should consider going for VCT. Key components of VCT include: It is voluntary. No one can make you go for VCT the decision to go for counselling and testing must be your own. It should involve appropriate counselling. Counselling consists of a private, face-to-face conversation with a specially trained counsellor aimed at helping you make informed decisions. Counselling helps individuals to actively deal with their problems to lead more fulfilling lives. HIV/AIDS counselling strives to give support to those whose lives have been affected by HIV/A/IDS and to prevent HIV infection and transmission to other people. Counselling provided at VCT sites is usually free. Both the details of the counselling and the results of the test are kept confidential. This means that neither the counsellor, nor the people doing the test or delivering the results of the test, can tell others about your result without your permission. There should be appropriate and effective referral and support systems in place to ensure that people with either a HIV positive or negative result are provided with the information and support necessary to continue living healthy, productive lives. The VCT process is designed to keep one as informed as possible about what is happening, the implications of one's decisions and the choices available for the future. The following steps provide a rough guide to what the process entails: STEP 1: Decide that you want to know status STEP 2: Go for pre-test counselling. This counselling aims to help you make a well-informed decision about whether or not to have the test, as well as to understand the possible impact that having the test may have on your life. STEP 3: Decide whether or not to proceed with the test. The test can be done immediately if you are at a one-stop facility, or you can agree to report at another time or facility for the test. STEP 4: Do the test. This is likely to involve the withdrawal of a small amount of blood. No names are attached to the samples or result, in order to ensure confidentiality. If you have any concerns about whether your result will be kept confidential, the VCT counsellor will be able to answer any queries that you have. It is up to you when and whether you obtain the results of your test. STEP 5: Go for post-test counselling. This is carried out when you go for your test results. This counselling will help you talk through and understand the implications of either a positive or negative test result and will provide you with the information you need to make informed choices about the future. You can decide when you are ready to go for post-test counselling and can go for as much or as little counselling as you feel you need. STEP 6: Receive your test results. These can be either positive or negative. You will receive your results during a post-test counselling session, which will help you to understand what a given result means for you. It will also allow you to ask any questions that you may have. STEP 7: Once you have received your results you may have a number of different options open to you. If you have received a negative test result, your counsellor may suggest that you have another test in a few months time to confirm your status. If you have received a positive result, you may want to go for additional ongoing counselling in order to help you cope with and

4 68 manage the virus. You might also need to be referred to other organisations which can provide you with information and support. It is your choice as to whether you pursue any of these options. It is important to emphasise that because VCT is a voluntary process, no one can force you to undergo any of these steps, and you can choose to leave the process at any point. You can also go through the process at your own pace and can choose whether you want to have a friend or relative accompany you through it. Diagramme 7: The steps involved in VCT It is a good idea to go through all the parts of the VCT process. Undergoing testing for HIV is difficult and often frightening. Years of experience, however, have shown that a process such as the one outlined above, which involves pre and post- test counselling, support and referral, helps to provide concrete information and make testing less frightening. Opting out of the process can deprive you of knowledge and information that is vital in helping to make informed decisions. When it comes to HIV/AIDS, it is hard to go it alone and VCT provides an opportunity to both get issues 'off your chest' and to access a range of support mechanisms. Not clarifying your status or refusing to go for appropriate counselling can result in tremendous emotional stress.

5 69 3 HIV Testing Section objectives: 1. Explain what HIV testing involves 2. Identify the factors that may result in a false positive or false negative test result 3.1 Facts about testing There are two types of HIV test. The first, the Western Blot, tests for the virus itself. This test is, however, expensive and is not the primary test used to establish whether the virus is present in someone's body. It is generally only used when other tests reveal an indeterminate result (a weak positive or a weak negative). The most commonly used tests test for the antibodies produced by the body to fight the virus (see Module 1). They do not test for the presence of the virus itself. The most frequently used test is the Elisa HIV antibody test. This test requires the withdrawal of a small amount of blood from a vein in the arm (urine, stool and saliva can also be used to test for antibodies, but most testing uses blood). This blood is then sent to a laboratory for analysis. It usually takes a week or two to obtain a result although, in emergencies, a result can be generated the same day. A number of rapid tests have also been developed over the past few years, which yield results in less than half and hour. These include: Pin prick tests: which require a drop of blood obtained from pricking the tip of the finger. This blood is placed on a testing strip, where a special fluid is added to yield a result. Mouth swabs: a mouth swab is used to collect cells from lining of the cheek. This swab is placed in a vial filled with a special fluid to yield a result. Thus, while it used to take several weeks or even a month or more to receive test results, now it may take between a few minutes to a few weeks to obtain a result. All the tests used in Southern Africa are reliable and accurate. If you are found to be HIV positive, you will need to go for additional, ongoing testing in order to monitor the concentration of the virus in your body (viral load), so that appropriate treatment can be prescribed and doctors can monitor the strength of your immune system.

6 False positive and negative results It is possible to obtain a falsely positive or negative result. Such results are very rare but can occur as a result of the following: False negatives: Testing during the window period (see Module 1); The virus not having progressed enough for the body to have produced sufficient anti-bodies to be picked up by the test; Technical error. False positives: Recent vaccination (against, for example, rabies and hepatitis); Technical error; Testing of an infant less than 18 months of age may detect maternal antibodies rather than the infant's; The presence of acute viral infections (for example, hepatic disease, certain strains of flu); The presence of malaria, bilharzia and other parasitic (worm) infections. To rule out the likelihood of false negatives and positives, it is a good idea to follow up either a negative or positive result with additional testing. If your first test comes back as negative, go for an additional two tests to confirm this negative status. These tests should be carried out at three month intervals to allow sufficient time for the body to begin producing antibodies in response to HIV infection (see Module 1). If your test comes back positive, it is a good idea to have a second test to confirm this positive result. 4 The costs and benefits of VCT Section objectives: 1. List three common attitudes that prevent individuals from going for testing 2. Explain the major costs associated with finding out one's HIV status 3. Explain the major benefits associated with finding out one's HIV status 4.1 Common attitudes to VCT VCT is promoted as central component of HIV/AIDS prevention strategies, but it is still not as accepted as it should be. This is largely due to the attitudes and misconceptions that people have about VCT. In this section and the next, we explore the common concerns that people have about VCT and outline the costs and benefits of undergoing testing. Fear and denial lie at the heart of most people not wanting to go for VCT. People are afraid of how the test may change their lives, or simply refuse to accept that they are as vulnerable as anyone else to contracting HIV. To a lesser extent, some

7 71 people are also quite fatalistic and hold the view that death comes to everyone and there is therefore no point in either worrying about HIV or trying to manage the virus. Common attitudes to VCT include: HIV/AIDS happens to someone else I am healthy so I don't need to go for a test I don't have HIV/AIDS, I have been bewitched I would rather not know my status Fear of the unknown I am worried that the results of the test will not be kept confidential Waiting for and receiving the result is too traumatic I am afraid of being stigmatized and isolated A positive result is a death sentence I have too much to lose I am going to die one day anyway so why worry There is nothing in it for me Many of these attitudes are completely understandable and many are rooted in legitimate concerns. However, the unfortunate truth is that anyone who is sexually active is at risk of contracting HIV, and the virus is an issue that affects us all. It is not something we can ignore. Furthermore, despite the difficulties involved in finding out and living with one's status, there are also many benefits to undergoing testing, which often outweigh many of the costs. The costs and benefits of VCT are outlined below. 4.2 Costs of VCT: Many of the perceived costs are related to common attitudes that people have and most are rooted in fear. They include: Having to live with the knowledge that one has HIV; Facing decisions about disclosure (whether to disclose, how to disclose, who you disclose to); Guilt, anxiety, depression and other negative emotions; Isolation, loneliness, rejection, stigmatization and discrimination; Rejection by employers and a lack of support for dependents following an employee's death. Due to the gender relations that exist in many communities in the region, costs are uneven for men and women, with women more likely to suffer negative consequences than men. Indeed, while men suffer stigma and discrimination as a result of their status, women are more likely to suffer abuse and isolation. As illustrated in Lindiwe's story in Module 4, many women are verbally and physically abused, and many are abandoned by their husbands or disowned by their families as a result of their positive status. In such cases, these woman have to bear not only the economic costs of such discrimination, but also the psychological and emotional consequences of both their status and the reaction of their family. In other instances the fear of what may happen if they disclose their status prevents HIV positive women from seeking the help and support necessary for them to cope with the virus and prevent transmission to their children. 4.3 Benefits of VCT: Going for VCT can be frightening and difficult, as can dealing with the implications of an HIV positive test result. The benefits of VCT, however, generally outweigh the costs. They include:

8 72 Peace of mind and the reduction of unnecessary anxiety. Knowing your status can reduce unnecessary anxiety as you will know whether or not you have contracted the virus. Even bad news can sometimes provide relief. Planning for the future, your children and your dependents. With knowledge about your HIV status, you may be in a better position to make positive decisions in your life and the lives of those you care about. VCT can also provide the information and incentive necessary to reduce risks (including abstaining from sex or using condoms each and every time you have sex). Reduced risk of transmitting the disease to others or increasing your own risk. Knowing your status allows you to take steps to prevent transmission of the virus to others and allows you to better protect your own health. If you are thinking about having a baby, for example, knowing your status can help to protect your own health during pregnancy and can help you put in place measures to prevent your baby contracting HIV. Similarly, knowing your status can help you to avoid passing on the infection to your partner. Accessing treatment and assistance. Health care workers will be in a better position to provide appropriate treatment, advice and support if they know your status. Early warning allows one to take action to protect one's health, while monitoring, treatment and advice on how to achieve a healthy lifestyle can help one to live a long and productive life. Indeed, if diagnosed early HIV can turn from a lethal disease into a manageable, long-term illness. HIV/AIDS should not be seen as the end of the road but rather as a bend in the road. Seeking VCT provides one with the support necessary to negotiate the bend. The benefits of VCT: Juliana's story Juliana's husband took a second wife who became sick and was found to have HIV. Although Juliana refused to have sex with her husband after he married the second wife, she found that she, too, was positive. She attempted suicide after her diagnosis and then again after her husband forced her to look after his other wife. It was after this second attempt that her sister advised her to go for counselling and she was told about an HIV support group. 'That was when I got all the help I wanted. I moved from denial to acceptance.' Later, her co-wife died. Juliana continued to refuse to have sex with her husband and stopped taking the contraceptive pill. 'As I was not having sex, one day my husband came and forced me to have sex with him. He raped me and I became pregnant.' Juliana had an incomplete abortion and was taken to hospital. At this point an HIV counsellor intervened and spoke to Juliana's husband about the effects of his behaviour, asking him whether he wanted to lose Juliana too. It was only then that her husband found out she had been pregnant and had had an abortion. 'He apologized to me. That is when we started to have a serious discussion about sex after 16 years of marriage. We decided to use condoms. We are now more in love than we were before and we go to support group meetings together.' Source: Positive Women: Voices and choices, International Community of Women living with HIV/AIDS (ICW), Zimbabwe, 2002.

9 73 The benefits of VCT: Elizabeth's Story In 2001 I was really sick. I was down for a very long time. I visited many different (traditional) doctors but they couldn't do anything for me. Eventually the home-based care group came to visit me. I asked them 'Can you help me go to hospital for a blood test?' When I heard my results I was really scared. I thought I'm dead; my life is over. I was frightened until a volunteer sat down and talked with me. She encouraged me to meet others who were HIV positive. Meeting others has given me a lot of strength and help. I'm receiving medicine and that's really helping me. At first my family were very disappointed but now we sit down and eat together we do everything together. Today I have peace of mind. Compared to 2001 my life has really improved. Now I encourage others to go to the hospital to know their status..there are a few problems with some people in the community. We often get taunted. When we walk down the road some people shout and mock us but we are glad, we prefer to be open. Source: OXFAM < 5 Disclosure Section objectives: 1. List the three disclosure options 2. Identify important issues to be aware of in disclosing one's HIV status 5.1 Different disclosure options Accessing help, planning for the future and adopting strategies to protect your own health and that of others usually requires disclosure of your status. As in the case of HIV testing, the decision as to whether to disclose your status or not should be voluntary. There are instances where one might have no choice in whether one's status is disclosed, such as where HIV/AIDS is a notifiable disease, or where HIV testing is done at the request of insurance companies or employers. Generally, however, this is not the case and the decision about whether to share your status with others is private. When it comes to disclosure there are a number of choices: Non-disclosure. You keep your status secret and do not reveal it to anyone else. Partial disclosure. You only tell certain people about your HIV status, such your partner, a relative, friend, doctor or counsellor. Full disclosure. You publicly reveal your HIV status. Disclosure is generally done on the principal of shared confidentiality, where you disclose your status on the understanding that people will not tell others without your permission. 5.2 Taking time to decide Disclosing can have life changing implications for both you and those around you. Disclosing your status can help to protect your own health and that of those you love, but it can also expose you to the anger, fear and prejudice of others. This may have implications for both you and your family. It is vital that you do not rush into disclosure it is an important decision.

10 74 Take time to think things through. Make sure that it is what you want to do. Identify sources of support, such as friends, family, health care workers, support groups for people living with HIV/AIDS, church members and counselling organisations. It may initially be easier to disclose to the people closest to you, such as friends, members of your family, or someone you trust. A good counsellor can support and reassure you and help you to accept your status. Be prepared for a shocked and even hostile reaction. This often happens, but with time people usually learn to accept one s HIV status. When you disclose, think about the other person's emotions and level of knowledge about HIV/AIDS. This will help you to decide what they need to know and how to tell them. Try to adopt positive ways of coping with stress and anger. There are many things that can help, including long walks, prayer, song, spending time with family and friends, or joining a support group. A counsellor can help to explore what will work best for you. 6 Strategies and resources for VCT Section objectives: 1. Explain the steps involved in establishing a successful workplace VCT programme. 2. Identify useful contacts and sources of assistance for individuals wanting to find out more about VCT or introduce VCT into their organisation. 6.1 Strategies for VCT Some countries in the region have relatively successful VCT programmes, while others have no programmes or have achieved limited success with the programmes that they have put in place. International experience has shown that the success of a VCT programme depends upon the strength of the foundation on which it is built. A successful VCT programme needs to form part of a comprehensive workplace programme dealing with HIV. In addition, it requires the following: Commitment and endorsement from senior management; The allocation of sufficient resources; The creation of a committee or other structure to oversee HIV/AIDS oriented activities. This body needs to have sufficient power and influence to realistically drive and oversee implementation processes; The creation of an open and supportive environment, where people feel able to go for testing and are able to access appropriate support following testing; An emphasis on confidentiality; An emphasis on ensuring that HIV positive employees are given the necessary support, treatment and information to continue their normal activities for as long as possible. 6.2 Steps involved in establishing a successful VCT programme: STEP 1: Establish support for the programme at senior management levels. The support of senior staff and leaders is vitally important in ensuring the necessary buy-in for a workplace programme or initiative. It is also important in ensuring the allocation of appropriate resources.

11 75 STEP 2: Decide on the most viable strategy for overseeing and implementing the programme. Decide what is possible with the available resources. For example, can you introduce an 'in-house' VCT programme, or would it be better to think about establishing linkages with other public, private or nongovernmental organisations to provide the VCT services? It may be useful to conduct either a situational analysis or a feasibility study to inform such decision making. STEP 3: Allocate resources to the programme. Human, financial and material resources must be allocated in proportion to the objectives and goals of the programme. STEP 4: Establish structures to oversee the design, implementation and monitoring of the programme. Whether in the form of co-ordinating structures or committees, these structures need to be adequately staffed and resourced. The staff involved in these structures should have sufficient status to drive the process, even at senior levels. These structures must be representative of the organisation and must be set achievable goals linked to realistic timeframes. STEP 5: Establish or link up with a comprehensive workplace programme. For any VCT programme to succeed, the target group must be aware of HIV/AIDS and the benefits of VCT. It is also necessary to ensure a supportive environment, in which people can access services without fear of stigmatisation. Finally, it is vital that people know about the VCT programme and how to access it. Education and awareness activities can address these issues, although it is important that such activities are carried out regularly and consistently. It is difficult to change people's attitudes and behaviour and it may take time for such activities to bear fruit. Peer educators are often most effective in transmitting such information. STEP 6: Put in place appropriate counselling and testing infrastructure. Ensure that such infrastructure maintains the confidentiality of its users. STEP 7: Monitor and evaluate the programme. This should include evaluation of the responsiveness of the programme to its target users and the issues and problems faced by personnel in accessing VCT services.

12 76 Best practice: the South African Police Service The South African Police Service (SAPS) established their VCT programme in January It forms part of the SAPS comprehensive HIV/AIDS programme and was rolled out as follows: The National Commissioner of the South African Police Service instructed top management to include VCT as part of the HIV/AIDS Programme during a management meeting in September SAPS committed itself to promoting and enhancing the benefits of VCT during a National HIV/AIDS Commitment Campaign in October A task team consisting of various role players, including organised labour, the SAPS Medical Aid Company and the National Department of Health, was established. The national launch of the programme was held in January 2003, where both the Minister for Safety and Security and the National Commissioner underwent VCT. VCT was rolled out to all provinces and divisions. Monitoring and evaluation mechanisms were put in place. The programme is monitored by the VCT task team, as well as provincial project managers. In this programme, VCT marks the beginning of a process rather than the end, and is utilised as the entry point for care and support services 6.3 Useful contact details and resources In most countries in the region, there are a number of places and organisations where one can go to find out more about VCT. These include: Public and private hospitals and clinics Dedicated police and military hospitals Departments of Health Non-governmental organisations Telephone help lines Written materials can be accessed from most of these sources, but there are also a number of organisations in the region who produce both health and HIV/AIDS oriented audio-visual materials. Most of these organisations are happy to post materials or provide referrals to other sources of help. Examples include: SaFAIDS ( Soul City (

13 77 Notes 1 These are taken from a pamphlet, HIV status and disclosure: choices and consequences, published by SaFAIDS. Information and contact details for SaFAIDS can be obtained from the organizations website:

14 78 SARPCCO Training: HIV/AIDS MODULE 7 POSITIVE LIVING Contributors: Capt Marili Williams SAPS: Social Work Services

15 79 MODULE 7: POSITIVE LIVING Module Goal: To provide the infected and affected with the knowledge to live positively with HIV/AIDS. Module Outline: 1. Options available after the test 2. Myths and misconceptions 3. Healthy living 4. ARV therapy and treatment 5. Support networks 6. Other sources of help and advice 1 Introduction There exists a strong belief that once diagnosed with HIV/AIDS, life will be traumatic, painful and short. This is not true. By adopting a healthy lifestyle and attitude and protecting one's health, it is possible to live a long and healthy life despite having HIV. The increasing availability of antiretroviral treatment in the developing world is also increasing the number of options available to people with HIV, with improved accessibility of these drugs promising to improve life expectancy and quality of life for peopleliving with the virus. This module explores how those infected with the virus can live positively with it and those affected by it can help those they care about live happier, healthier lives. Much of the information contained in this module is not solely for those who are infected or affected by HIV/AIDS. Much of what is described in this module can help you live a healthier, happier lifewhether you are affected by the virus or not. 2 Options available after the test Section objective: Debunk three key myths about what it means to have HIV. Contrary to what many people believe, HIV is not necessarily a death sentence. Although there are many people who become ill and die from HIV/AIDS in a short period of time, with a healthy diet and lifestyle and a positive attitude, people with HIV can live long and productive lives. This section explores some of the common myths and misconceptions that people have about living with HIV/AIDS. MYTH: Being diagnosed with HIV means imminent death While people who are diagnosed with AIDS when they are seriously ill often do die quite quickly after their diagnosis, people who are diagnosed before they become seriously ill can live long, healthy lives. Even sick people have been known to have recovered their health. There are increasing numbers of people who have lived with HIV/AIDS for upwards of 15 years and who are still healthy.

16 80 MYTH: There is nothing I can do to protect my health once diagnosed with HIV Experience over the last two decades has shown that a positive attitude and a healthy diet and lifestyle can be powerful tools in helping to preserve health. It is also possible to obtain effective treatment for most of the opportunistic infections that affect people with HIV and early treatment can prevent such infections from becoming serious. There are also a number of herbal and other remedies available which can help to boost the immune system, in order to both prevent and treat infections. Antiretroviral drugs, which reduce the levels of HIV in the body, are becoming increasingly available and can help a person with AIDS to regain their health and to live a long and productive life. MYTH: People with HIV/AIDS are 'useless' or burdens on their families This idea is linked to the notion that people with HIV/AIDS are sick and are going to die quickly. People with AIDS do become extremely ill, but people in earlier stages of the virus are generally healthy and productive and can take steps to protect and maintain their health. People living with HIV/AIDS still have a great deal to offer their families and community. Many people have been inspired by their diagnosis to make positive changes in their lives; changes that have enabled them to make an even greater contribution to the world around them. 3 Healthy living Section objectives: 1. Identify key strategies for maintaining a healthy body 2. Identify key strategies for maintaining a healthy mind 3. Identify key strategies for maintaining a healthy soul or spirit Health is not only about knowing all the facts; it is about wanting to be alive and using knowledge to achieve this. In order to live with and manage HIV/AIDS, you need to want to live and beat the virus. Once this decision is made, you can take steps towards creating and sustaining a healthy body, healthy mind and healthy soul or spirit - all of which are vital in both fighting off infection and leading a more fulfilling life. Diagramme 8: The 'survival recipe Source: N Orr, Positive Health, 2003.

17 81 Maintaining a healthy body, mind and soul in the context of HIV/AIDS is often referred to as 'living positively'. Important elements of living positively are explored in the remainder of this section. 3.1 Healthy body Improve your nutrition: Certain foods help to build the immune system and protect you from disease. People with HIV need to increase their intake of such foods in order to better fight off infection. Such foods include: Fresh fruits and vegetables. These contain vitamins and minerals which help to protect the body. Dark green, leafy vegetables (like spinach and morogo), yellow vegetables (such as pumpkins) and vegetables or fruit high in vitamin C (like oranges, tomatoes, lemons, naartjies, guavas and mangos) should be eaten every day. Starches. Mielie meal porridge, bread, potatoes, ndumbi and sweet potatoes provide energy for one's body to work. They should be eaten every day and are best eaten in the morning so that that can provide the body with energy during the day. Whole wheat and brown bread are better than white bread. Proteins. Meat, chicken, fish, eggs, cheese milk, amasi, beans, peas and lentils help the body to build and repair itself. These should also be eaten everyday. Oils. Fish oil, olive oil, sunflower oil and other vegetable oils provide energy and should be eaten regularly. The oils and fats found in meat and milk should be avoided as they are not good for your heart. Trim meat of fat and try to drink lower fat milk. These and other immune boosting foods are summarized in the table below: Much of the information included in this section is taken from a book by N Orr, Positive Health, published by Metropolitan in 2003.

18 82 Table 5: Examples of foods that build the body After N Orr, Positive Health, Following a balanced diet should provide most of the things your body needs in order for it be healthy and better fight off infection. If you can afford them, it can also be good to take additional vitamin and mineral supplements. The table below highlights the most important vitamins and minerals required.

19 83 Table 6: Important vitamins and minerals After N Orr, Positive Health, Drink lots of water and other beverages in moderation: Most of our body is made up of water and water is important for flushing toxins out of our bodies. We need to drink at least two litres of water a day to be healthy. Other drinks, such as tea and coffee are okay, but should be drunk in addition to water. Small amounts of alcohol are also fine, but drinking large amounts of alcohol everyday can reduce the ability to fight off infection. Cut down on the amount of sugar in tea and coffee, as sugar may stimulate infections such as thrush and shingles. Sugar and HIV: Sugar encourages the growth of unhealthy fungus on a person's tongue, in their vagina, stomach and other areas resulting in thrush and other infections. More than 20 teaspoons of sugar per day reduces the number of fighter cells by half. This can cause severe health problems, such as severe weight loss, diarrhea, fatigue and vulnerability to illness and infection. Ensure good hygiene: People with HIV/AIDS are more likely to die from stomach infections than any other kind of illness. Good hygiene is extremely important in order to avoid introducing germs into the digestive system. It is important to: Clean food: Wash all food thoroughly - if the water comes from borehole, well, river or lake, add one cap full of bleach to a basin of water. Use this to thoroughly wash vegetables, eggs and meat. The bleach will evaporate and will not affect the taste of the food.

20 84 Keep meat and vegetables separate when preparing food. Keep cooking and cutting surfaces clean. Cook meat well: Meat often contains worms and other parasites. Cook meat until there is no pink or red inside, especially chicken, bacon and other meat from pigs. Fish must be either consumed fresh, or frozen immediately and consumed as soon as it is defrosted. Cook eggs well: Do not use cracked eggs. Do not eat raw eggs and cook them until they are no longer runny inside. Avoid eating left-over food: Food that has been cooked and then left to cool down can gather many germs. Try to cook only as much as a person can eat. If you must eat left over food, heat the food to boiling point to kill any germs. Fermented foods, such as fermented porridge, are alright to eat although if eaten excessively they may aggravate fungal infections such as thrush. Clean water: Water from boreholes, rivers and lakes must be boiled. A major cause of illness in people with HIV is dirty water. This causes stomach problems such as diarrhoea and dysentery. Keep warm: A person's body fights infections, including HIV, better when it is warm. Heat weakens the virus and at the same time increases the body's ability to fight infections. One of the easiest - and best - methods of staying healthy with HIV, or any other infection, is to ensure that your body does not get cold. Normal body temperature for adults is 37 degrees Celsius (98.6 degrees Fahrenheit). Exercise: Physical movement keeps a person's body temperature higher and helps the body to fight infection by keeping the lymph glands working properly (the body's soldier cells are stored in the lymph glands, which depend on the movement of muscles to work). Walking or jogging for at least 20 minutes per day is sufficient to boost your temperature and immune system. Stretching exercises are also good. If you are ill, just try to move your arms and legs to the get the lymph glands working. Don't overdo such exercise; stop if you experience any pain. Seek treatment for infections as early as possible: Everyday infections and illnesses can become life threatening for people living with HIV/AIDS. Effective treatment of infections will also help to prevent both serious illness and further strain on the immune system. Most clinics and hospitals can provide treatment for common illnesses associated with the virus. Even if you are only suffering from a minor illness, seek treatment as quickly as possible.

21 85 There are a range of cheap western and traditional medicines available that effectively alleviate the symptoms of many common opportunistic infections. For example, leaving amasi (sour milk) on the affected area overnight has been shown to be effective in easing the symptoms of thrush. A few drops of fresh lemon juice applied several times a day has also proved effective in healing cold sores and shingles blisters. The staff at your local clinic should be able to provide you with further information about such treatments. Ensure healthy sexuality: There is no reason why people with HIV can not continue to have a fulfilling sex life. Taking simple precautions, such as using either a male or female condom during every sexual encounter, can protect both you and your partner from re-infection or infection. Again, your doctor should be able to provide you with information on additional things that you can do to ensure healthier sexual relationships. Healthy sexuality: The dangers of re-infection HIV changes itself all the time and there are a number of different strains of the virus. Even if your partner is also HIV positive, it is important to use condoms to avoid re-infecting each other with different variations of the virus. The introduction of new forms of the virus increases the viral load in the blood and makes it more difficult for the body to fight the infection. This is because the body has to fight more than one strain of the virus at the same time. It also makes it much more difficult to treat the virus, as varying forms may respond differently to treatment. 3.2 Healthy mind Having a healthy mind involves taking control of your life; knowing what you want, who you are, what is important to you and how you want to live. It requires having family and friends who love and support you. It also requires having a purpose in life: religion or some other belief system helps. Research shows that a healthy state of mind helps the immune system and improves health. Remember: Don't give up on the future! Who knows what the future may hold in terms of treatment or cure? In the meantime, you need pleasure and excitement in your life. These things help to keep your body and mind well. Avoid: Stress. This releases hormones (chemicals) in the body which suppress the immune system. Keep things in perspective and try to avoid stressful situations. Boredom. This drains your energy and enthusiasm. Keep active and do things that you enjoy. Fear. If not resolved, it can cause great damage to your ability to fight infections. Take action and deal with the fear, develop a plan of action and be prepared to deal positively with the unknown. Where you encounter stress, fear and boredom, deal with these emotions and move on.

22 Healthy soul or spirit Know you have a choice: Other people may do things to you, but only you can choose how you view and respond to situations, including being infected with HIV. For example, if you think that you are a victim, then you will act, speak and feel accordingly. If, on the other hand, you want to be a long-term survivor, you need to act and think positively and focus on feeling alive. Either way, you have the right to choose how you live and you can change your mind any time you like. A positive attitude and will to live can overcome bodily illness. Find things to occupy your mind: Don't spend all your time worrying about the future and living in fear, because in so doing you are missing out on all the wonders and the beauty around you. Try and find things to take your mind off your problems: find a hobby, keep busy and spend time interacting with those around you. Talk to god or a higher being Experience has shown that spiritual wellbeing can be greatly improved by belief in, and communication with, a higher being. This can be a god or any other force or being that you feel influences your life and destiny. Living positively: Edna s story Edna is from Kenya and is 32 years old. She has been infected for 15 years and she is healthy and fit. When Edna was diagnosed as being HIV positive she was shocked because she had been faithful to her husband for many years and the diagnosis meant that he had had sex with other women while he was married to her. When she told her husband about the HIV test, he told her to leave, and he kept their two children. Her family also rejected her, as they did not know that you can not get HIV just from being near someone. Having no home, no family and no job, she left the village where she lived and moved to the city of Nairobi in order to find work. This was not easy and many nights she slept outside on the pavement. One day she was desperate and went to the local church to seek help. At first the people there did not want her to stay. However, a kind man gave her food and helped her to get a job at a fish factory nearby. Edna is a religious woman. She often prayed to God, asking why he was punishing her in this way, and she was angry at God for doing this to her. One night, as she was praying, a voice in her head told her that God loved her. She was most surprised, as she thought that God was punishing her! Over the next few months she began to think about why these things were happening. Was it punishment, or was it some kind of test? Eventually she came to the conclusion that God does not hurt his children and that people were the ones causing her pain. When she read the Bible, it said that God loved all his creatures. This was another surprise to her, as this meant that God loved HIV as well! How was this possible? She did not understand how this could be the case, but accepted that it might be true. She had a discussion with the virus in her body and came to an agreement that she would not kill it if it did not try to kill her. Edna says that this was an important event for her, as she no longer felt as if there was an enemy in her body, and began to feel as though she could learn something from it. Over the next few years she realised that there were many people with HIV and AIDS who were being rejected by their families and communities. She began to speak to people about her experiences and offered help where she could. She started making an effort to always keep busy (except for Sundays) and she tries to eat as many fruit and vegetables as possible. She does not smoke or drink alcohol.

23 87 She now says that it was her faith in God that has helped her, because she knows that she is never alone and is always loved. She does not care what people think of her anymore - she knows that she is following the path that God intends for her. She says that she has also faced all the things she feared the most - being rejected, losing her family and children, illness and death and says that she has little to fear anymore. She says that she is not concerned for the future, as she knows that her life will end when her task is done, and not before. She is happy and has even remarried. Source: N Orr, Positive health, 2003 Living positively: David s story David has been HIV positive for almost 20 years and is one of the longest-surviving (and healthy) people with HIV in the world today. He was born in Zambia in He got infected with HIV in about 1981 and in became ill in His doctor told him that he had six months to live, and that he should not come back to the doctor's office, as the other patients would object. When he became ill in 1983 he had already developed the symptoms of what is today called AIDS. He had lost over one third of his body weight, had severe lung infections, and his immune system was almost completely destroyed. He says that the first thing that he thought of after being told he was going to die was that he might as well have some fun before he died! He also did a rather strange thing: he bought his coffin, planned his own funeral and then bought a house! Over the next year or so, many of his friends died of AIDS. He was depressed and decided to have a talk to the virus in his body. He said to the virus that he accepted the fact that the virus could kill him. However, he also told the virus that he could kill it by killing himself. So he negotiated a deal with the virus: 'If you do not kill me, I will not kill you.' Over the next few years his health gradually improved. After about four to five years his body (immune system) returned to a normal state of health and has remained that way ever since. David says that, although he is not religious in any way, he has strong spiritual beliefs and he says he talks to God almost every day. He also says that the most important thing he ever did was to change his attitude about himself and other people. He says that problems at school caused him to need other people's approval a great deal, and that when he decided to recognize his own value, he stopped seeking other people's approval. This has changed his life. It meant that he began to tell people what he felt and thought, even when the other person may not have liked what he had to say. He says that he has to be honest, as telling lies to protect other people's feelings is not good for him or for them. He does not do any from of exercise, but people who know him will tell you that he is almost constantly busy doing things, never sitting still! He does not follow any specific diet, but makes sure that he eats well. David also says that it was important for him to deal with his fears of death and dying and that he is grateful that he did this early on in his infection. David says that he has tried not to take life for granted, and he now makes a point of watching the sun rise and set, and taking some time to appreciate nature, music and all the good things in life. When he wakes up in the morning he thanks God for breathing and for another day to do more things. Source: N Orr, Positive health, 2003

24 88 4 Antiretroviral therapy Section objectives: 1. Explain what antiretroviral drugs are and how they work. 2. Give three reasons why drug adherence and resistance are important in determining the effectiveness of ARV treatment. 3. Outline the state of HIV vaccine development. There are a number of antiretroviral drugs available which can greatly improve the health and quality of life of people suffering from AIDS. These should not be seen as an alternative to positive living, but should be viewed as an additional weapon for combating the effects of the virus. 4.2 What are antiretroviral drugs? Antiretroviral drugs (ARVs) are medicines that reduce the level of HIV (viral load) in the blood. ARVs stop the reproduction of the virus within the body and kill off the viruses present in the blood. Such treatment reduces the viral load to very low or even undetectable levels, allowing the number of CD4 cells to increase. This allows the immune system to recover. Once the immune system has recovered, a person on ARVs will posses normal levels of immunity and is unlikely to contract any opportunistic infections. There are a number of different ARVs on the market and new drugs are continuously being developed. ARVs that many people have heard of include: Azidothymidine or Zidovudine (AZT or ZDV); Nevirapine; and, Lamivudine. It has been found that where only one drug is taken (monotherapy), HIV manages to quickly develop resistance to that one drug, so that it eventually becomes ineffective. Two drugs have also been found to be insufficient to control the virus for long periods of time. A combination of three drugs is now used. This is known as triple therapy or Highly Active Antiretroviral Therapy (HAART). ARVs can dramatically reduce the amount of the virus in the blood and can help to return the body to normal levels of immunity. They are NOT A CURE. If treatment is stopped, the viral load will begin to increase. This is because, although ARVs kill the viruses that are present in the blood, they are not able to reach and kill viruses embedded in the body's organs. If treatment is stopped, these viruses will quickly begin reproducing again. ARVs thus represent a lifelong commitment once you have started taking them you generally need to continue taking them for the remainder of your life. Starting and then stopping ARVs can result in drug resistance (see section 4.3, below). 4.2 When are ARVs used? ARVs are used in a number of different contexts. As already mentioned, PEP involves taking a short course of ARV treatment to help prevent HIV transmission in cases of occupational exposure or sexual abuse (see Module 2). A limited dose of ARV medication is also administered to prevent mother to child transmission (MTCT) of HIV. This involves administering a dose of ARVs to the mother just prior to her giving birth and to the baby within three days of its birth. This reduces the mother's viral load, and therefore the likelihood of her passing the virus to her baby, and helps to prevent the virus from taking hold in the baby's body. Finally, ARVs are used as a long-term therapy to maintain the health of people living with HIV/AIDS.

25 89 Where ARVs are used in long-term therapy, they are generally only prescribed when immune system has weakened to the point where it is no longer able to properly protect them against infection. As explained in Module 1, it may take many years before a person with HIV reaches this point, and a healthy diet, lifestyle and attitude can help to prolong this period. Doctors often disagree about when the best time to begin ARV therapy is. Respected guidelines, however, suggest that you should consider treatment if you have either suffered serious opportunistic infections, or have a CD4 count of 350 or below. It is advisable to seek treatment before your CD4 count falls below 200, as a weakening of the immune system to this level may result in irreversible health problems. 4.3 Drug adherence and resistance 'Adherence' is the extent to which people take all the medication they are supposed to when they are supposed to. Research has shown that unless people take ARV medication correctly at least 90 percent of the time, the medication becomes ineffective and treatment is likely to fail. ARVs, like many other medications, need be taken at the same time each day. When this is is up to you. The important thing is that the time between taking your pills is kept the same, so that the level of medication in your blood remains constant. This is due to something called a 'half life'. Medications are designed to be eliminated from the body after a certain period of time in order to avoid the drugs building up in the body and becoming poisonous. For example, many sleeping pills are eliminated from the blood stream two to three hours after they are consumed. The length of time required for the body to eliminate medicines from the blood stream is what is referred to as the 'half life'. This varies from medicine to medicine. Where the level of medicine must remain constant in the body, it needs to be taken regularly in order to 'top up' the amount of medication in the blood as previous doses are removed. A failure to consistently take your medication at the same time each day may result in the levels of medication in the blood dropping, reducing its effectiveness. This may not only allow the virus to begin reproducing again, it may also result in the virus becoming resistant to the drugs used. HIV is constantly reproducing and changing itself. Where the reproduction of the virus is suppressed, the likelihood of the virus changing itself is also reduced. If the virus is able to resume reproducing, the virus can change itself so that a particular medication no longer has any impact. If this happens, the medication used will have to be changed, and possibly made stronger, potentially increasing the experience of side effects. If this happens repeatedly, there is also a chance that ARVs may cease to be a viable treatment option. 4.4 The availability of ARVs The last few years have seen enormous progress in the development and use of antiretroviral drugs (ARVs), yet many of the benefits have bypassed developing countries. Key issues in this regard have been: The cost of ARVs. ARVs are very expensive. The price has steadily fallen from over 1000 US dollars per person per year in the late 1990s, but ARVs have remained unaffordable for most individuals and governments.

26 90 Inadequate facilities to role out ARV treatment in the developing world. The successful role out of ARVs requires sufficient health care workers with the knowledge to prescribe and monitor the use of ARVs, laboratories to do the necessary testing and analysis, and the administrative infrastructure to ensure that there is a steady supply of treatment. These elements are lacking in many developing countries. Concerns over the taking of ARVs in resource poor settings. People on ARVs often have to take many pills several times a day and it is very important that they take all the pills at the correct time and don't skip pills. ARVs can also have side effects, such as headaches, skin rashes, nausea and diarrhoea and often need to be taken with specific kinds of food in order to limit these effects and help them work better. Many people have expressed concern that in settings where people are poorly educated and stigmatised, they fail to take their pills properly, or may be unable to take their medication with the necessary foods. The rollout of ARVs has been very slow, with the World Health Organisation (WHO) estimating that only a relatively small proportion of people are presently receiving ARVs worldwide. Only a few countries in the region, provide ARVs through their public health system. Some of the larger private sector companies in the region provide ARVs to their employees, as do some public sector institutions. For the most part, however, ARV treatment has been confined to those that can afford to buy their own, or are fortunate enough to be on medical aid schemes that cover it. This is changing. The price of some ARVs has dropped to less than 150 US dollars per person per year. The fall in drug prices, together with international emphasis on the provision of treatment, has resulted in increasing numbers of donors and governments committing to the rollout of ARV treatment. The Global Fund for HIV/AIDS, Tuberculosis and Malaria has also granted substantial funds to several countries in the region to support treatment programmes. Treatment is also getting simpler, with multiple antiretrovirals being combined into one pill that can be taken twice a day. This greatly increases the likelihood of proper adherence. These pills, together with a growing acknowledgment that people in resource poor settings can and do adhere to treatment as long as proper information and support is provided, are likely to encourage the implementation of ARV programmes. 4.5 Vaccines A vaccine is a medicine that permanently protects you from getting a particular illness. A vaccine does not cure an illness, but it prevents you from either contracting it or suffering its effects. As yet no one has been able to develop a vaccine for HIV. Three main types of HIV vaccine are being investigated: Preventive vaccines: aim to stop the virus establishing itself in the body after exposure and includes vaccines that aim to reduce the likelihood of the virus being transmitted through sexual intercourse. Therapeutic vaccines: to prevent HIV from progressing to AIDS. Perinatal vaccines: to prevent the mother to child transmission of HIV. These vaccines would hopefully provide a more effective version of current prevention of mother to child transmission activities, which use antiretrovirals to prevent transmission from mother to child. It is unlikely that an effective vaccine will be discovered within the next ten years, although increasing levels of funding are being made available to speed up research. Even when vaccines eventually become available, they may be only 50 to 70 percent effective. Vaccines will have to be used in addition to other prevention methods, including the later start of sexual activity, reduced number of partners and consistent and correct condom use (see Module 5 for more on prevention).

27 91 5 Support networks Section objective: Identify major sources of support for people living with HIV/AIDS People either infected or affected by HIV need to receive emotional and physical support. It is vital that you tap into the growing number of resources available. You will need: Someone to talk to about how you feel. This can be a friend or family member, a counsellor, or anyone else you feel comfortable with. Remember that such a person may not be able to provide solutions to your problems. They need only to listen and to provide emotional comfort. Someone (or more than one person) who can provide you with the practical information and assistance you may need from time to time to deal with problems. For example, it is a good idea to see a doctor every few months to check one's health and to provide necessary information. Support networks and mechanisms may include the following: Family Families can provide emotional, social, financial and physical support and can provide vital love and compassion. Severe and terminal illness can be emotionally, physically and financially draining for families. It is important that families also tap into resources, such as support groups, home-based care services and non-governmental organisations (NGO s). Families should also try and access any financial support available, including public grants and programmes and, where they exist, police pension, housing and disability benefits. Home and community care Home and community care is often the only means of support for people in the late stages of their illness. Home and community care usually takes the form of a group of volunteers who regularly visit the sick in a specific community. They usually assist their carers in looking after the sick and provide information as well as material, emotional and physical support to both the sick person and their family. Such volunteers can usually refer you to other sources of assistance, such as hospices or NGOs. These services can provide vital information to both HIV positive people and their families and valuable opportunities for increasing awareness of HIV and its prevention. They can also play an important role in helping people to prepare for the care of orphaned children and increasing knowledge of legal rights regarding property and inheritance. Hospitals and clinics Hospital and clinic staff are able diagnose HIV and perform, or refer, individuals to appropriate counselling, education and follow-up care. Many are also in a position to refer individuals and their families to home and community based care initiatives, support groups and other sources of assistance. They are also best placed to treat infections or, where necessary, refer people for additional treatment.

28 92 Peer educators Although the main purpose of peer educators is to train and educate colleagues on issues surrounding HIV/AIDS prevention and awareness, they also play a vital role in supporting people infected and affected by HIV/AIDS. Peer educators are trained to listen and to give emotional support. They can also refer you to other sources of help. Support groups There are often a range of support groups available for people living with HIV/AIDS and their families. These may be run by institutions, such as the police services, hospitals, NGOs, religious groups, or private individuals. Such groups generally bring together a group of people with similar experiences and needs to provide each other with valuable emotional support, information and advice. Table 7: Other support networks

29 93 Notes 1 N Orr, Positive Health, published by Metropolitan, Further information can be obtained at ( 2 Dr M Biot, Medecines Sans Frontieres, presentation at the second Metropolitan HIV/AIDS Conference, Maputo, 4th 6th November,

30 78 SARPCCO Training: HIV/AIDS MODULE 7 POSITIVE LIVING Contributors: Capt Marili Williams SAPS: Social Work Services

31 79 MODULE 7: POSITIVE LIVING Module Goal: To provide the infected and affected with the knowledge to live positively with HIV/AIDS. Module Outline: 1. Options available after the test 2. Myths and misconceptions 3. Healthy living 4. ARV therapy and treatment 5. Support networks 6. Other sources of help and advice 1 Introduction There exists a strong belief that once diagnosed with HIV/AIDS, life will be traumatic, painful and short. This is not true. By adopting a healthy lifestyle and attitude and protecting one's health, it is possible to live a long and healthy life despite having HIV. The increasing availability of antiretroviral treatment in the developing world is also increasing the number of options available to people with HIV, with improved accessibility of these drugs promising to improve life expectancy and quality of life for peopleliving with the virus. This module explores how those infected with the virus can live positively with it and those affected by it can help those they care about live happier, healthier lives. Much of the information contained in this module is not solely for those who are infected or affected by HIV/AIDS. Much of what is described in this module can help you live a healthier, happier lifewhether you are affected by the virus or not. 2 Options available after the test Section objective: Debunk three key myths about what it means to have HIV. Contrary to what many people believe, HIV is not necessarily a death sentence. Although there are many people who become ill and die from HIV/AIDS in a short period of time, with a healthy diet and lifestyle and a positive attitude, people with HIV can live long and productive lives. This section explores some of the common myths and misconceptions that people have about living with HIV/AIDS. MYTH: Being diagnosed with HIV means imminent death While people who are diagnosed with AIDS when they are seriously ill often do die quite quickly after their diagnosis, people who are diagnosed before they become seriously ill can live long, healthy lives. Even sick people have been known to have recovered their health. There are increasing numbers of people who have lived with HIV/AIDS for upwards of 15 years and who are still healthy.

32 80 MYTH: There is nothing I can do to protect my health once diagnosed with HIV Experience over the last two decades has shown that a positive attitude and a healthy diet and lifestyle can be powerful tools in helping to preserve health. It is also possible to obtain effective treatment for most of the opportunistic infections that affect people with HIV and early treatment can prevent such infections from becoming serious. There are also a number of herbal and other remedies available which can help to boost the immune system, in order to both prevent and treat infections. Antiretroviral drugs, which reduce the levels of HIV in the body, are becoming increasingly available and can help a person with AIDS to regain their health and to live a long and productive life. MYTH: People with HIV/AIDS are 'useless' or burdens on their families This idea is linked to the notion that people with HIV/AIDS are sick and are going to die quickly. People with AIDS do become extremely ill, but people in earlier stages of the virus are generally healthy and productive and can take steps to protect and maintain their health. People living with HIV/AIDS still have a great deal to offer their families and community. Many people have been inspired by their diagnosis to make positive changes in their lives; changes that have enabled them to make an even greater contribution to the world around them. 3 Healthy living Section objectives: 1. Identify key strategies for maintaining a healthy body 2. Identify key strategies for maintaining a healthy mind 3. Identify key strategies for maintaining a healthy soul or spirit Health is not only about knowing all the facts; it is about wanting to be alive and using knowledge to achieve this. In order to live with and manage HIV/AIDS, you need to want to live and beat the virus. Once this decision is made, you can take steps towards creating and sustaining a healthy body, healthy mind and healthy soul or spirit - all of which are vital in both fighting off infection and leading a more fulfilling life. Diagramme 8: The 'survival recipe Source: N Orr, Positive Health, 2003.

33 81 Maintaining a healthy body, mind and soul in the context of HIV/AIDS is often referred to as 'living positively'. Important elements of living positively are explored in the remainder of this section. 3.1 Healthy body Improve your nutrition: Certain foods help to build the immune system and protect you from disease. People with HIV need to increase their intake of such foods in order to better fight off infection. Such foods include: Fresh fruits and vegetables. These contain vitamins and minerals which help to protect the body. Dark green, leafy vegetables (like spinach and morogo), yellow vegetables (such as pumpkins) and vegetables or fruit high in vitamin C (like oranges, tomatoes, lemons, naartjies, guavas and mangos) should be eaten every day. Starches. Mielie meal porridge, bread, potatoes, ndumbi and sweet potatoes provide energy for one's body to work. They should be eaten every day and are best eaten in the morning so that that can provide the body with energy during the day. Whole wheat and brown bread are better than white bread. Proteins. Meat, chicken, fish, eggs, cheese milk, amasi, beans, peas and lentils help the body to build and repair itself. These should also be eaten everyday. Oils. Fish oil, olive oil, sunflower oil and other vegetable oils provide energy and should be eaten regularly. The oils and fats found in meat and milk should be avoided as they are not good for your heart. Trim meat of fat and try to drink lower fat milk. These and other immune boosting foods are summarized in the table below: Much of the information included in this section is taken from a book by N Orr, Positive Health, published by Metropolitan in 2003.

34 82 Table 5: Examples of foods that build the body After N Orr, Positive Health, Following a balanced diet should provide most of the things your body needs in order for it be healthy and better fight off infection. If you can afford them, it can also be good to take additional vitamin and mineral supplements. The table below highlights the most important vitamins and minerals required.

35 83 Table 6: Important vitamins and minerals After N Orr, Positive Health, Drink lots of water and other beverages in moderation: Most of our body is made up of water and water is important for flushing toxins out of our bodies. We need to drink at least two litres of water a day to be healthy. Other drinks, such as tea and coffee are okay, but should be drunk in addition to water. Small amounts of alcohol are also fine, but drinking large amounts of alcohol everyday can reduce the ability to fight off infection. Cut down on the amount of sugar in tea and coffee, as sugar may stimulate infections such as thrush and shingles. Sugar and HIV: Sugar encourages the growth of unhealthy fungus on a person's tongue, in their vagina, stomach and other areas resulting in thrush and other infections. More than 20 teaspoons of sugar per day reduces the number of fighter cells by half. This can cause severe health problems, such as severe weight loss, diarrhea, fatigue and vulnerability to illness and infection. Ensure good hygiene: People with HIV/AIDS are more likely to die from stomach infections than any other kind of illness. Good hygiene is extremely important in order to avoid introducing germs into the digestive system. It is important to: Clean food: Wash all food thoroughly - if the water comes from borehole, well, river or lake, add one cap full of bleach to a basin of water. Use this to thoroughly wash vegetables, eggs and meat. The bleach will evaporate and will not affect the taste of the food.

36 84 Keep meat and vegetables separate when preparing food. Keep cooking and cutting surfaces clean. Cook meat well: Meat often contains worms and other parasites. Cook meat until there is no pink or red inside, especially chicken, bacon and other meat from pigs. Fish must be either consumed fresh, or frozen immediately and consumed as soon as it is defrosted. Cook eggs well: Do not use cracked eggs. Do not eat raw eggs and cook them until they are no longer runny inside. Avoid eating left-over food: Food that has been cooked and then left to cool down can gather many germs. Try to cook only as much as a person can eat. If you must eat left over food, heat the food to boiling point to kill any germs. Fermented foods, such as fermented porridge, are alright to eat although if eaten excessively they may aggravate fungal infections such as thrush. Clean water: Water from boreholes, rivers and lakes must be boiled. A major cause of illness in people with HIV is dirty water. This causes stomach problems such as diarrhoea and dysentery. Keep warm: A person's body fights infections, including HIV, better when it is warm. Heat weakens the virus and at the same time increases the body's ability to fight infections. One of the easiest - and best - methods of staying healthy with HIV, or any other infection, is to ensure that your body does not get cold. Normal body temperature for adults is 37 degrees Celsius (98.6 degrees Fahrenheit). Exercise: Physical movement keeps a person's body temperature higher and helps the body to fight infection by keeping the lymph glands working properly (the body's soldier cells are stored in the lymph glands, which depend on the movement of muscles to work). Walking or jogging for at least 20 minutes per day is sufficient to boost your temperature and immune system. Stretching exercises are also good. If you are ill, just try to move your arms and legs to the get the lymph glands working. Don't overdo such exercise; stop if you experience any pain. Seek treatment for infections as early as possible: Everyday infections and illnesses can become life threatening for people living with HIV/AIDS. Effective treatment of infections will also help to prevent both serious illness and further strain on the immune system. Most clinics and hospitals can provide treatment for common illnesses associated with the virus. Even if you are only suffering from a minor illness, seek treatment as quickly as possible.

37 85 There are a range of cheap western and traditional medicines available that effectively alleviate the symptoms of many common opportunistic infections. For example, leaving amasi (sour milk) on the affected area overnight has been shown to be effective in easing the symptoms of thrush. A few drops of fresh lemon juice applied several times a day has also proved effective in healing cold sores and shingles blisters. The staff at your local clinic should be able to provide you with further information about such treatments. Ensure healthy sexuality: There is no reason why people with HIV can not continue to have a fulfilling sex life. Taking simple precautions, such as using either a male or female condom during every sexual encounter, can protect both you and your partner from re-infection or infection. Again, your doctor should be able to provide you with information on additional things that you can do to ensure healthier sexual relationships. Healthy sexuality: The dangers of re-infection HIV changes itself all the time and there are a number of different strains of the virus. Even if your partner is also HIV positive, it is important to use condoms to avoid re-infecting each other with different variations of the virus. The introduction of new forms of the virus increases the viral load in the blood and makes it more difficult for the body to fight the infection. This is because the body has to fight more than one strain of the virus at the same time. It also makes it much more difficult to treat the virus, as varying forms may respond differently to treatment. 3.2 Healthy mind Having a healthy mind involves taking control of your life; knowing what you want, who you are, what is important to you and how you want to live. It requires having family and friends who love and support you. It also requires having a purpose in life: religion or some other belief system helps. Research shows that a healthy state of mind helps the immune system and improves health. Remember: Don't give up on the future! Who knows what the future may hold in terms of treatment or cure? In the meantime, you need pleasure and excitement in your life. These things help to keep your body and mind well. Avoid: Stress. This releases hormones (chemicals) in the body which suppress the immune system. Keep things in perspective and try to avoid stressful situations. Boredom. This drains your energy and enthusiasm. Keep active and do things that you enjoy. Fear. If not resolved, it can cause great damage to your ability to fight infections. Take action and deal with the fear, develop a plan of action and be prepared to deal positively with the unknown. Where you encounter stress, fear and boredom, deal with these emotions and move on.

38 Healthy soul or spirit Know you have a choice: Other people may do things to you, but only you can choose how you view and respond to situations, including being infected with HIV. For example, if you think that you are a victim, then you will act, speak and feel accordingly. If, on the other hand, you want to be a long-term survivor, you need to act and think positively and focus on feeling alive. Either way, you have the right to choose how you live and you can change your mind any time you like. A positive attitude and will to live can overcome bodily illness. Find things to occupy your mind: Don't spend all your time worrying about the future and living in fear, because in so doing you are missing out on all the wonders and the beauty around you. Try and find things to take your mind off your problems: find a hobby, keep busy and spend time interacting with those around you. Talk to god or a higher being Experience has shown that spiritual wellbeing can be greatly improved by belief in, and communication with, a higher being. This can be a god or any other force or being that you feel influences your life and destiny. Living positively: Edna s story Edna is from Kenya and is 32 years old. She has been infected for 15 years and she is healthy and fit. When Edna was diagnosed as being HIV positive she was shocked because she had been faithful to her husband for many years and the diagnosis meant that he had had sex with other women while he was married to her. When she told her husband about the HIV test, he told her to leave, and he kept their two children. Her family also rejected her, as they did not know that you can not get HIV just from being near someone. Having no home, no family and no job, she left the village where she lived and moved to the city of Nairobi in order to find work. This was not easy and many nights she slept outside on the pavement. One day she was desperate and went to the local church to seek help. At first the people there did not want her to stay. However, a kind man gave her food and helped her to get a job at a fish factory nearby. Edna is a religious woman. She often prayed to God, asking why he was punishing her in this way, and she was angry at God for doing this to her. One night, as she was praying, a voice in her head told her that God loved her. She was most surprised, as she thought that God was punishing her! Over the next few months she began to think about why these things were happening. Was it punishment, or was it some kind of test? Eventually she came to the conclusion that God does not hurt his children and that people were the ones causing her pain. When she read the Bible, it said that God loved all his creatures. This was another surprise to her, as this meant that God loved HIV as well! How was this possible? She did not understand how this could be the case, but accepted that it might be true. She had a discussion with the virus in her body and came to an agreement that she would not kill it if it did not try to kill her. Edna says that this was an important event for her, as she no longer felt as if there was an enemy in her body, and began to feel as though she could learn something from it. Over the next few years she realised that there were many people with HIV and AIDS who were being rejected by their families and communities. She began to speak to people about her experiences and offered help where she could. She started making an effort to always keep busy (except for Sundays) and she tries to eat as many fruit and vegetables as possible. She does not smoke or drink alcohol.

39 87 She now says that it was her faith in God that has helped her, because she knows that she is never alone and is always loved. She does not care what people think of her anymore - she knows that she is following the path that God intends for her. She says that she has also faced all the things she feared the most - being rejected, losing her family and children, illness and death and says that she has little to fear anymore. She says that she is not concerned for the future, as she knows that her life will end when her task is done, and not before. She is happy and has even remarried. Source: N Orr, Positive health, 2003 Living positively: David s story David has been HIV positive for almost 20 years and is one of the longest-surviving (and healthy) people with HIV in the world today. He was born in Zambia in He got infected with HIV in about 1981 and in became ill in His doctor told him that he had six months to live, and that he should not come back to the doctor's office, as the other patients would object. When he became ill in 1983 he had already developed the symptoms of what is today called AIDS. He had lost over one third of his body weight, had severe lung infections, and his immune system was almost completely destroyed. He says that the first thing that he thought of after being told he was going to die was that he might as well have some fun before he died! He also did a rather strange thing: he bought his coffin, planned his own funeral and then bought a house! Over the next year or so, many of his friends died of AIDS. He was depressed and decided to have a talk to the virus in his body. He said to the virus that he accepted the fact that the virus could kill him. However, he also told the virus that he could kill it by killing himself. So he negotiated a deal with the virus: 'If you do not kill me, I will not kill you.' Over the next few years his health gradually improved. After about four to five years his body (immune system) returned to a normal state of health and has remained that way ever since. David says that, although he is not religious in any way, he has strong spiritual beliefs and he says he talks to God almost every day. He also says that the most important thing he ever did was to change his attitude about himself and other people. He says that problems at school caused him to need other people's approval a great deal, and that when he decided to recognize his own value, he stopped seeking other people's approval. This has changed his life. It meant that he began to tell people what he felt and thought, even when the other person may not have liked what he had to say. He says that he has to be honest, as telling lies to protect other people's feelings is not good for him or for them. He does not do any from of exercise, but people who know him will tell you that he is almost constantly busy doing things, never sitting still! He does not follow any specific diet, but makes sure that he eats well. David also says that it was important for him to deal with his fears of death and dying and that he is grateful that he did this early on in his infection. David says that he has tried not to take life for granted, and he now makes a point of watching the sun rise and set, and taking some time to appreciate nature, music and all the good things in life. When he wakes up in the morning he thanks God for breathing and for another day to do more things. Source: N Orr, Positive health, 2003

40 88 4 Antiretroviral therapy Section objectives: 1. Explain what antiretroviral drugs are and how they work. 2. Give three reasons why drug adherence and resistance are important in determining the effectiveness of ARV treatment. 3. Outline the state of HIV vaccine development. There are a number of antiretroviral drugs available which can greatly improve the health and quality of life of people suffering from AIDS. These should not be seen as an alternative to positive living, but should be viewed as an additional weapon for combating the effects of the virus. 4.2 What are antiretroviral drugs? Antiretroviral drugs (ARVs) are medicines that reduce the level of HIV (viral load) in the blood. ARVs stop the reproduction of the virus within the body and kill off the viruses present in the blood. Such treatment reduces the viral load to very low or even undetectable levels, allowing the number of CD4 cells to increase. This allows the immune system to recover. Once the immune system has recovered, a person on ARVs will posses normal levels of immunity and is unlikely to contract any opportunistic infections. There are a number of different ARVs on the market and new drugs are continuously being developed. ARVs that many people have heard of include: Azidothymidine or Zidovudine (AZT or ZDV); Nevirapine; and, Lamivudine. It has been found that where only one drug is taken (monotherapy), HIV manages to quickly develop resistance to that one drug, so that it eventually becomes ineffective. Two drugs have also been found to be insufficient to control the virus for long periods of time. A combination of three drugs is now used. This is known as triple therapy or Highly Active Antiretroviral Therapy (HAART). ARVs can dramatically reduce the amount of the virus in the blood and can help to return the body to normal levels of immunity. They are NOT A CURE. If treatment is stopped, the viral load will begin to increase. This is because, although ARVs kill the viruses that are present in the blood, they are not able to reach and kill viruses embedded in the body's organs. If treatment is stopped, these viruses will quickly begin reproducing again. ARVs thus represent a lifelong commitment once you have started taking them you generally need to continue taking them for the remainder of your life. Starting and then stopping ARVs can result in drug resistance (see section 4.3, below). 4.2 When are ARVs used? ARVs are used in a number of different contexts. As already mentioned, PEP involves taking a short course of ARV treatment to help prevent HIV transmission in cases of occupational exposure or sexual abuse (see Module 2). A limited dose of ARV medication is also administered to prevent mother to child transmission (MTCT) of HIV. This involves administering a dose of ARVs to the mother just prior to her giving birth and to the baby within three days of its birth. This reduces the mother's viral load, and therefore the likelihood of her passing the virus to her baby, and helps to prevent the virus from taking hold in the baby's body. Finally, ARVs are used as a long-term therapy to maintain the health of people living with HIV/AIDS.

41 89 Where ARVs are used in long-term therapy, they are generally only prescribed when immune system has weakened to the point where it is no longer able to properly protect them against infection. As explained in Module 1, it may take many years before a person with HIV reaches this point, and a healthy diet, lifestyle and attitude can help to prolong this period. Doctors often disagree about when the best time to begin ARV therapy is. Respected guidelines, however, suggest that you should consider treatment if you have either suffered serious opportunistic infections, or have a CD4 count of 350 or below. It is advisable to seek treatment before your CD4 count falls below 200, as a weakening of the immune system to this level may result in irreversible health problems. 4.3 Drug adherence and resistance 'Adherence' is the extent to which people take all the medication they are supposed to when they are supposed to. Research has shown that unless people take ARV medication correctly at least 90 percent of the time, the medication becomes ineffective and treatment is likely to fail. ARVs, like many other medications, need be taken at the same time each day. When this is is up to you. The important thing is that the time between taking your pills is kept the same, so that the level of medication in your blood remains constant. This is due to something called a 'half life'. Medications are designed to be eliminated from the body after a certain period of time in order to avoid the drugs building up in the body and becoming poisonous. For example, many sleeping pills are eliminated from the blood stream two to three hours after they are consumed. The length of time required for the body to eliminate medicines from the blood stream is what is referred to as the 'half life'. This varies from medicine to medicine. Where the level of medicine must remain constant in the body, it needs to be taken regularly in order to 'top up' the amount of medication in the blood as previous doses are removed. A failure to consistently take your medication at the same time each day may result in the levels of medication in the blood dropping, reducing its effectiveness. This may not only allow the virus to begin reproducing again, it may also result in the virus becoming resistant to the drugs used. HIV is constantly reproducing and changing itself. Where the reproduction of the virus is suppressed, the likelihood of the virus changing itself is also reduced. If the virus is able to resume reproducing, the virus can change itself so that a particular medication no longer has any impact. If this happens, the medication used will have to be changed, and possibly made stronger, potentially increasing the experience of side effects. If this happens repeatedly, there is also a chance that ARVs may cease to be a viable treatment option. 4.4 The availability of ARVs The last few years have seen enormous progress in the development and use of antiretroviral drugs (ARVs), yet many of the benefits have bypassed developing countries. Key issues in this regard have been: The cost of ARVs. ARVs are very expensive. The price has steadily fallen from over 1000 US dollars per person per year in the late 1990s, but ARVs have remained unaffordable for most individuals and governments.

42 90 Inadequate facilities to role out ARV treatment in the developing world. The successful role out of ARVs requires sufficient health care workers with the knowledge to prescribe and monitor the use of ARVs, laboratories to do the necessary testing and analysis, and the administrative infrastructure to ensure that there is a steady supply of treatment. These elements are lacking in many developing countries. Concerns over the taking of ARVs in resource poor settings. People on ARVs often have to take many pills several times a day and it is very important that they take all the pills at the correct time and don't skip pills. ARVs can also have side effects, such as headaches, skin rashes, nausea and diarrhoea and often need to be taken with specific kinds of food in order to limit these effects and help them work better. Many people have expressed concern that in settings where people are poorly educated and stigmatised, they fail to take their pills properly, or may be unable to take their medication with the necessary foods. The rollout of ARVs has been very slow, with the World Health Organisation (WHO) estimating that only a relatively small proportion of people are presently receiving ARVs worldwide. Only a few countries in the region, provide ARVs through their public health system. Some of the larger private sector companies in the region provide ARVs to their employees, as do some public sector institutions. For the most part, however, ARV treatment has been confined to those that can afford to buy their own, or are fortunate enough to be on medical aid schemes that cover it. This is changing. The price of some ARVs has dropped to less than 150 US dollars per person per year. The fall in drug prices, together with international emphasis on the provision of treatment, has resulted in increasing numbers of donors and governments committing to the rollout of ARV treatment. The Global Fund for HIV/AIDS, Tuberculosis and Malaria has also granted substantial funds to several countries in the region to support treatment programmes. Treatment is also getting simpler, with multiple antiretrovirals being combined into one pill that can be taken twice a day. This greatly increases the likelihood of proper adherence. These pills, together with a growing acknowledgment that people in resource poor settings can and do adhere to treatment as long as proper information and support is provided, are likely to encourage the implementation of ARV programmes. 4.5 Vaccines A vaccine is a medicine that permanently protects you from getting a particular illness. A vaccine does not cure an illness, but it prevents you from either contracting it or suffering its effects. As yet no one has been able to develop a vaccine for HIV. Three main types of HIV vaccine are being investigated: Preventive vaccines: aim to stop the virus establishing itself in the body after exposure and includes vaccines that aim to reduce the likelihood of the virus being transmitted through sexual intercourse. Therapeutic vaccines: to prevent HIV from progressing to AIDS. Perinatal vaccines: to prevent the mother to child transmission of HIV. These vaccines would hopefully provide a more effective version of current prevention of mother to child transmission activities, which use antiretrovirals to prevent transmission from mother to child. It is unlikely that an effective vaccine will be discovered within the next ten years, although increasing levels of funding are being made available to speed up research. Even when vaccines eventually become available, they may be only 50 to 70 percent effective. Vaccines will have to be used in addition to other prevention methods, including the later start of sexual activity, reduced number of partners and consistent and correct condom use (see Module 5 for more on prevention).

43 91 5 Support networks Section objective: Identify major sources of support for people living with HIV/AIDS People either infected or affected by HIV need to receive emotional and physical support. It is vital that you tap into the growing number of resources available. You will need: Someone to talk to about how you feel. This can be a friend or family member, a counsellor, or anyone else you feel comfortable with. Remember that such a person may not be able to provide solutions to your problems. They need only to listen and to provide emotional comfort. Someone (or more than one person) who can provide you with the practical information and assistance you may need from time to time to deal with problems. For example, it is a good idea to see a doctor every few months to check one's health and to provide necessary information. Support networks and mechanisms may include the following: Family Families can provide emotional, social, financial and physical support and can provide vital love and compassion. Severe and terminal illness can be emotionally, physically and financially draining for families. It is important that families also tap into resources, such as support groups, home-based care services and non-governmental organisations (NGO s). Families should also try and access any financial support available, including public grants and programmes and, where they exist, police pension, housing and disability benefits. Home and community care Home and community care is often the only means of support for people in the late stages of their illness. Home and community care usually takes the form of a group of volunteers who regularly visit the sick in a specific community. They usually assist their carers in looking after the sick and provide information as well as material, emotional and physical support to both the sick person and their family. Such volunteers can usually refer you to other sources of assistance, such as hospices or NGOs. These services can provide vital information to both HIV positive people and their families and valuable opportunities for increasing awareness of HIV and its prevention. They can also play an important role in helping people to prepare for the care of orphaned children and increasing knowledge of legal rights regarding property and inheritance. Hospitals and clinics Hospital and clinic staff are able diagnose HIV and perform, or refer, individuals to appropriate counselling, education and follow-up care. Many are also in a position to refer individuals and their families to home and community based care initiatives, support groups and other sources of assistance. They are also best placed to treat infections or, where necessary, refer people for additional treatment.

44 92 Peer educators Although the main purpose of peer educators is to train and educate colleagues on issues surrounding HIV/AIDS prevention and awareness, they also play a vital role in supporting people infected and affected by HIV/AIDS. Peer educators are trained to listen and to give emotional support. They can also refer you to other sources of help. Support groups There are often a range of support groups available for people living with HIV/AIDS and their families. These may be run by institutions, such as the police services, hospitals, NGOs, religious groups, or private individuals. Such groups generally bring together a group of people with similar experiences and needs to provide each other with valuable emotional support, information and advice. Table 7: Other support networks

45 93 Notes 1 N Orr, Positive Health, published by Metropolitan, Further information can be obtained at ( 2 Dr M Biot, Medecines Sans Frontieres, presentation at the second Metropolitan HIV/AIDS Conference, Maputo, 4th 6th November,

46 94 SARPCCO Training: HIV/AIDS MODULE 8 PERSONAL EFFECTIVENESS Contributors: Capt Marili Williams SAPS: Social Work Services

47 95 MODULE 8: PERSONAL EFFECTIVENESS Module Goal: To empower participants with the skills and knowledge required to both safeguard their own health and become agents of change. Module Outline: 1. Introduction 2. Strengthening self-image 3. Personal motivation 4. Handling feelings 5. Assertiveness 6. Dealing with conflict 7. Personal goals 1 Introduction Much of what has been discussed in the previous modules relies on you being self confident, assertive, emotionally literate and able to deal effectively with adverse situations. These are often learned qualities and do not come naturally to everyone. The aim of this module is to strengthen such traits and to develop the skills and knowledge necessary implement the ideas learned in the previous modules. 2 Strengthening self-image Section objectives: 1. Explain the importance of a positive self-image 2. Make use of simple tools to enhance self-image A car that is not maintained properly will inevitably become a wreck. A house that is not looked after will become rundown. Likewise, a person's self image must be maintained if it is to remain strong and vibrant. A positive self-image is an important component of a healthy body, mind and soul. You need to take care of your self-image in the same way that you would take care of your health or relationships. By doing this, you will not only lead a happier, more fulfilling life, you will also be in a better position to take the steps necessary to protect your own health and that of others. Life is full of temporary disappointments, heartaches, failures and problems and if you are not careful these can easily drag you down. Everyone needs to regularly reinforce their self-image in order to keep it healthy. You can do this by regularly feeding your mind with positive, uplifting and inspiring thoughts about yourself. You can even cheat a little and include thoughts that aren't yet true. Your subconscious mind will accept any thought about yourself that you think regularly, and if you think it often enough, it will eventually become part of your self-image. The following three statements can be used to immediately strengthen your self image:

48 96 YOU ARE UNIQUE! No one has the same thoughts, ideas, or ways of doing things. Most people think they are ordinary, but don't make this mistake. You are unique. This is a good thing. You should recognize your uniqueness and nurture it in your actions and thinking. If you draw on your uniqueness and treat yourself with the dignity you deserve, you will not only live a more fulfilling life, you will also be better equipped to make the decisions necessary to protect your health and future. YOU CAN DO ANYTHING! Life affords everyone countless opportunities and choices, but it easy to become bogged down in one's day to day routines and lose sight of what one is capable of. You can do just about anything you put your mind to. This includes living a healthier, happier life and changing your behaviour to achieve this. YOU HAVE UNLIMITED POWER You have unlimited power at your disposal, in the sense that you can choose your own thoughts. Nobody can tell you what to think or how to think. Every individual alone determines what to do with this power. You can use it to build and strengthen any area of your life. In this regard, it is important to: Remember that what you think about yourself determines who you become: Timid thoughts create a timed person. Confidant thoughts create a confident person. Weak thoughts create a weak person. Strong thoughts create a strong person. Thoughts with purpose create a person with purpose. Visionary thoughts create a visionary person. Thoughts of helplessness create a helpless person. Thoughts of self-pity create a person filled with self-pity. Enthusiastic thoughts create an enthusiastic person. Loving thoughts create a loving person. Successful thoughts create a successful person. You are responsible for your own self-image and for the creation and maintenance of this self-image. You can visualize, develop and assert your positive qualities. Love yourself. Self-love is not the belief that 'I am better than you are,' it is the acceptance that 'I am OK as I am.' It is the realisation that you don't have to be anything other than what you are. Ironically, the moment you accept yourself as you are, you can easily change yourself to become someone different. As long as you dislike aspects of yourself it is difficult to change, for it is self-acceptance at the deepest levels which frees one to move forward. Take the pressure off. You don't have to be anybody but yourself. Once you accept this, you can explore some of the other 'selves' you might want to become.

49 97 Have self confidence. Believe that you can and will succeed. We all make mistakes and encounter negative things in our lives. Learn from these if you can and put them behind you. You are in the here now and the future waits. 3 Personal motivation Section objectives: 1. Define motivation 2. Describe three ways of improving personal motivation Motivation can be thought of as the force driving one to achieve one's objectives, or the reasons one has for wanting to achieve particular things. These reasons, or motives, are usually connected with one's needs, such as the need to be accepted, to perform, or to survive. Such needs encourage one to strive for specific goals. If these are achieved, the underlying needs are satisfied and one's motivation disappears. If not, one will continue to try and satisfy these needs. Motivation is an outcome of three things: thoughts, emotions and action or behaviour. Your thoughts are crucial. They influence how you feel, which in turn influences how you behave. As already touched on, if you think positive thoughts, you will feel positive emotions and are more likely to pursue positive actions. If you think negatively, you will feel negative emotions, which in turn is likely to result in negative actions or demotivation. The elements of motivation Thoughts Feelings Action 3.1 Improving self-motivation Motivation comes from within and we are all responsible for motivating ourselves. We can not be motivated by others, only inspired and stimulated to become motivated. Useful guidelines for improving self-motivation include the following: Depend on yourself. To be self-motivated implies being driven from your own needs, desires, goals and willpower.

50 98 This means that you must do things for yourself instead of depending on others to motivate you. Give yourself credit. Recognize your achievements and reward yourself for things well done. Be realistic. Set objectives that are challenging but achievable. By achieving them you will give yourself a sense of selfsatisfaction and worth. If you set unrealistic goals and fail, this will damage your feelings of self-worth. Take one step at a time. Break the goals down into more manageable components, otherwise you may be overwhelmed and lose interest. Believe in yourself. Believe in your own potential, skills and knowledge to achieve your goal. Do things yourself instead of relying on others. Set motivational anchors. This can be done by doing something practical to remind yourself of your objective and motivation, such as writing yourself a note, drawing yourself a picture or adopting a role model. 4 Handling feelings Section objectives: 1. Explain why it is important to manage your feelings 2. Identify five common feelings and how to most effectively respond to them 3. Describe the difference between sympathy and empathy and why empathy is more beneficial than sympathy 4.1 Types of feelings Feelings can often have a subtle effect on your daily conduct without you realising it. They can colour your perceptions and shape your actions. In this respect, actions and attitudes can often be 'feelings in disguise'. That is, they can stem from an emotional response to a particular situation. This can apply in one of two ways: Feelings can act as an 'accelerator'. They can motivate you to do certain things. Such feelings can be beneficial, although they can also make you act rashly or cause you to take unnecessary risks. Feelings can act as a 'brake'. They can demotivate you and stand in the way of you achieving your goals. For example, feelings of loss and sadness can rob you of your energy and commitment, and can leave you struggling to cope with the demands placed on you. Your body also reacts chemically to the emotions that you feel; negative feelings can weaken your immune system or make you sick. In the context of HIV/AIDS, feelings can put you at risk of infection, cause you to discriminate against others, or make it hard for you to move on with your life after a positive diagnosis. Unresolved emotion can also negatively impact on your health. Alternatively, feelings can also encourage change and give you the strength to counter adversity. A better understanding of the role of feelings is therefore important in better equipping you to deal with the situations you encounter. Common feelings include: Loss. When a person dies or leaves, or one loses something one values such as a one's job or health, one may experience deep feelings of loss; that one's world has shattered or become empty. When this happens, one tends to go into shock and is unable to absorb information, to plan, or to even to think clearly. This is normal and passes with time. Anger. When someone hurts one, treats one badly, or becomes ill or dies, one may feel angry, let down, hurt or betrayed. If we become ill, or suffer some other misfortune, we may also become angry with ourselves. This is not

51 99 necessarily a bad thing. Anger can help to energize one, to move one forward and to help one act. It can, however, also make one act impulsively, aggressively and hurtfully which can be bad for all concerned. Guilt. Feelings of guilt can arise when one has something to feel guilty about. They can also arise in response to a loss, even where one has nothing to feel guilty about. For example, a common response when someone dies is to say things like: 'If only I... ', as if one is in some way responsible for the death. It is important to remember that guilt is often an irrational response to a painful situation. Joy. When things go well or one receives good news, one may also feel periods of intense happiness and exhilaration. Anxiety. Anxiety is a state of generalized emotional discomfort. It is similar to fear, but is harder to define - one generally knows what it is that one is afraid of, while anxiety is less specific - often just a sense of unease. 4.2 Dealing with feelings Feelings are a normal and vital part of our existence. Intense feelings, however, can be destructive. The following provide useful guidelines for dealing with feelings, particularly negative ones: ACCEPT your feelings. Say to yourself: 'I am sad.' 'I am frightened', I am angry'. Tell yourself that it is alright to have these feelings. RELAX and take some time before you act. Take slow deep breathes and relax all the muscles in your body. THINK about ways to help yourself. Thinking will help you find ways of moving forward, instead of allowing you to hurt yourself, or make things worse. DO something to help yourself. It often helps to talk to someone or to do something that you enjoy. If this doesn't work, go back to thinking about what you can best do to improve the situation. The table below suggests additional ways of dealing with specific emotions: Table 9: Strategies for dealing with common feelings

52 Sympathy versus empathy Where feelings are expressed openly and explicitly by others, they are usually easy to recognize and identify with. When this occurs, there is a very strong temptation to acknowledge this by saying something along the lines of: 'I know how you feel'.

53 101 However, as many have found to their great cost, comments such as these can be disastrous when feelings are running high. This is because a bland response to intense feelings is likely to be experienced as an invalidation of these feelings. A more helpful and appropriate comment would be something like: 'I can see that this is upsetting...' or 'I realise you must be angry about this'. Such comments acknowledge that there are strong feelings at play, but do not give the impression that you 'know' what is going on inside the other person's head. This raises the distinction between sympathy and empathy. Sympathy entails sharing the same feelings as another person. Empathy, by contrast, involves recognizing another person's feelings and responding to them, without actually feeling them ourselves. Of course, empathy rarely occurs in a pure form. It is inevitable that you will feel at least a hint of what another person is feeling. This has the potential to make you feel very uncomfortable, and can result in you ignoring such feelings, and giving them as little attention as possible. It is, however, important that this response is acknowledged and dealt with, so that you are able to treat others with the sensitivity they deserve. At the same time, it is necessary to create some distance between yourself and the other person. You can not constantly identify with other people's feelings without quickly becoming overwhelmed 5 Assertiveness Section objectives: 1. Define assertiveness and distinguish between passive, assertive and aggressive behaviour 3. Give three reasons why assertiveness is important 4. List at least five ways of improving assertiveness 5. Explain the link between assertiveness and moral courage Assertive behaviour is a vital component of a healthy, happy life and much of what we have spoken about in this manual is based on one being able negotiate what one feels to be correct and appropriate behaviour. The following section explores what assertiveness is and provides guidelines for becoming assertive. 5.2 What is assertive behaviour? Self-assertiveness implies presenting yourself positively to other people. Responsible, assertive behaviour is the direct, relevant expression of your opinions, convictions, needs or feelings, in such a way that they do not infringe on the rights of others. Assertive behaviour involves understanding your own feelings and communicating them honestly to others. It also involves respecting the feelings, opinions and rights of others, while at the same time encouraging others to respect yours. Being assertive DOES NOT MEAN being aggressive or domineering. The differences between passive, self assertive and aggressive behaviour are highlighted in the table below:

54 102 Table 10: The characteristics of passive, assertive and aggressive individuals To be assertive is normal and appropriate. By being assertive, other people know where you stand and how you feel. Expressing your needs clearly and confidently encourages others to do the same. It is, however, necessary to be tactful and listen to the claims of others. 5.2 Why is assertiveness important? Both passive and aggressive behaviour create frustration and negativity. They also prevent one from either achieving one's goals or creating an environment in which one is able to reach one's full potential. In the context of HIV/AIDS, in particular, passivity and aggression are obstacles to understanding and communication. They stand in the way of making decisions about one's health and future, or where such decisions are made, leave one unable to follow through on them. For example, the inability to negotiate the correct and consistent use of condoms may prevent one from properly protecting oneself against HIV infection. In accepting that assertiveness is a necessary part of who you are, it is important to realise that: By standing up for your rights, you show respect for yourself and others, and will be more likely to command respect. By trying to live your life so as to never hurt others, you end up hurting both yourself and them.

55 103 Sacrificing your own rights usually destroys relationships or prevents new ones from forming. Sacrificing your rights trains others to mistreat you. By not telling people when their behaviour negatively affects you, you are denying them the opportunity to change. When you do what is right for you, you feel better about yourself and have more authentic and satisfying relationships with others. Everyone has a right to courtesy and respect. You have the right to express yourself, as long as you do not violate the rights of others. Key issues: Personal and individual rights Personal rights: People have the following rights: To be treated in a civil manner To privacy (although this does not mean driving others out of where they are because one wants to be alone). To own property (but not to obtain it by stealing) To assert how one would like to be treated In thinking about your own behaviour and self-concept, you have the right to: Evaluate your own behaviour, ideas and feelings and to take responsibility for them Not apologise for specific behaviour and feelings Decide for yourself whether you want to find solutions to other people's problems To change your mind To make mistakes To admit that you don't know To be illogical To say 'I don't understand' To say 'I don't care' To be independent of other people 5.3 Guidelines for self-assertive behaviour How then does one assert oneself without infringing on the rights and needs of others? The following provide useful guidelines for becoming more assertive: Tell people what you think, feel and want clearly and forcefully. Say 'I' feel, or think, or would like. Do not apologise for saying what you think or put yourself down. Stand or sit in a relaxed way. Hold your head up and look the other person in the eye. Speak so that people can hear you clearly. Stick with your own ideas and stand up for yourself. Don't be afraid to disagree with people. Accept other people's right to say 'no' and learn how to say 'no' yourself.

56 104 Being more assertive: 'I' messages 'I' messages help one to tell others how one feels in a constructive way. They are less accusing and help to diffuse defensiveness, anger and aggression. There are three components to the 'I' message: 1) Describe how you feel 2) Describe what it is that upsets you 3) Describe how the person's behaviour affects you For example, instead of saying to your partner 'you are so selfish, you only care about yourself', an appropriate 'I' message might go something like: 'I am so frustrated when you don't take my needs into account, as it makes me feel unimportant to you '. 5.4 Moral courage Assertiveness is often difficult in the absence of moral courage. Moral courage refers to the courage to stand up for what you believe even, even where others may disagree with you, or punish you in various ways. Let us go back to some of the issues around HIV/AIDS: In a macho environment like the police services, it may be considered strange, even 'sissy' or 'unmanly', to abstain from sex or to drink less. Such behaviour may lead to teasing or ridicule. Whether you are assertive or not, standing your ground in the face of such teasing and ridicule may be difficult. It would much easier to back down, to 'go with the flow' and to be 'cool'. Likewise, accepting and extending a hand of friendship to someone with HIV/AIDS may also make you unpopular in environments where there is a great deal of stigma and discrimination. There is even a chance of being physically or verbally abused for making such a stand. Again, it would be easier to keep your head down and to follow the herd. Standing your ground, taking a decision to protect your own health and that of others and treating others with the respect they deserve, often entails following a harder path. Doing these things, and sticking with them, requires a great deal of moral courage. 6 Dealing with conflict Section objectives: 1. Identify the five conflict management strategies 2. Explain which of the five strategies most constructively manages conflict 3. List four guidelines for effectively resolving conflict Conflicts arise as a result of differing goals, needs and expectations. Many people have a negative attitude towards conflict and feel that it should be avoided at all costs. Conflict is, however, normal. Personalities and goals differ. Every relationship contains an element of conflict, disagreement and opposing interests. This is particularly so when HIV/AIDS enters the equation. HIV/AIDS related issues, such as HIV prevention, discrimination and disclosure, can all evoke negative reactions from others. This section explores ways of dealing with such conflict.

57 Conflict management strategies People tend to use five main strategies in dealing with conflict: 1. Avoidance: side-stepping, postponing or ignoring the issue. 2. Forcing: making others to do what you want them to do, or forcing them to do something they don't want to do. 3. Accommodation: fulfilling the needs of others and not asserting your own. 4. Compromise: meeting others halfway; trading some of what you want for some of what they want. 5. Collaboration: working with others to obtain a mutually beneficial outcome. Using dinner as an example: You avoid when you don t say when you want to eat and agree to eat at whatever time suits others. You force when you want to eat at 6:30, others want to eat at 6:00, and you make them eat at 6:30. You accommodate when you want to eat at 6:00, others want to eat at 6:30, and you agree to eat at 6:30 and change your plans accordingly. You compromise when you say you want to eat at 6:00, others say they want to eat at 6:30, and you all find middle ground by eating at 6:15. You collaborate when you say you want to eat at 6:00, others say they want to eat at 6:30, and you all agree to eat at 8:45, which works best for all of you. Let us look at these different strategies in greater detail: Avoiding (the Turtle). People adopting this strategy believe that is easier to withdraw from conflict. They give up on personal goals and avoid issues over which there is conflict, or people they are conflict with. They do not address the problem. Avoiding constitutes passive behaviour. Avoiding might take the form of diplomatically sidestepping an issue, postponing an issue until a better time, or simply withdrawing from a threatening situation. Forcing/Confronting (the Shark). People using this strategy try to overpower their opponents by forcing them to accept their solution to the problem. They are aggressive and pursue their own concerns at other's expense. Forcing or confronting may take the form of 'standing up for one's rights', defending a position which one believes is correct, or simply trying to win. Accommodating (the Teddy Bear). People using this strategy believe that conflict can not be handled without damaging relationships. Maintaining relationships is of the utmost importance, while the meeting of personal goals is secondary. There is an element of selfsacrifice in this mode. Teddy bears want to be liked and accepted by others. They are afraid of conflict. Accommodating behaviour is unassertive. Accommodating might take the form of selfless generosity or charity, obeying another person when one would prefer not to, or yielding to another's point of view.

58 106 Compromising (the Fox). Such people are willing to sacrifice part of their goal in order to achieve a common one. This position is somewhere between passivity and assertiveness. Compromising falls between competing and accommodating. It addresses an issue more directly than avoiding, but doesn't explore it in as much depth as collaborating. Compromising might mean splitting the difference, exchanging concessions, or pursuing a middle-ground position. Collaborating (the Owl). People using this strategy see conflict as something that must be resolved constructively, while allowing both parties to meet their goals. Negative feelings are verbalised and handled. Collaborating involves working with others to find a solution which fully satisfies the concerns of all the parties. Collaborating might take the form of exploring a disagreement to learn from each other's insights, resolving a situation which would otherwise have individuals competing for resources, or confronting and finding a creative solution to an interpersonal the problem. None of these strategies is more or less effective than other, although different strategies will have different implications for the achievement of personal goals. One is likely to use different conflict managing strategies in response to different situations. In terms of achieving personal goals, however, it is best to use strategies that will constructively resolve the conflict. It is not good to always avoid conflict, to force your will on others or to accommodate, as all these strategies involve either passivity or aggression neither of which allow for the respectful and mutually beneficial fulfillment of goals. It is good to seek collaborative responses that allow everyone concerned to benefit constructively from the conflict. 6.2 Basic guidelines for managing conflict: Conflict is best managed through the use of assertive negotiation. In addition to the guidelines for becoming more assertive, useful pointers for constructively dealing with conflict include the following: Listen attentively and check whether you have correctly understood what the other person is saying. Keep to the subject of discussion and deal with one issue at a time. Focus on issues, not on people. Forget the past; concentrate on the present and the future. Be open and honest in your handling of the dispute. 7 Personal goals Section objectives: 1. Define what goals are and explain the difference between short, medium and long-term goals. 2. List the three steps involved in setting realistic, motivational goals 3. Explain how to monitor and achieve such goals