Partners, Family and Friends
This page provides helpful information for partners, family members and friends of people who are HIV positive. It includes basic information about HIV/AIDS and tips for people close to, or caring for, people living with HIV/AIDS.
What is HIV?
HIV stands for Human Immunodeficiency Virus. It is the virus that causes AIDS—the Acquired Immunodeficiency Syndrome. HIV (sometimes called the AIDS virus) attacks the immune system, leaving people open to developing other infections which would normally be fought off by the healthy body.HIV also has a direct effect on the body causing a set of symptoms and illnesses.
If a person is told that they are HIV positive, this means that they have come in contact with HIV and it has established itself in their body. It also means that they can pass the virus on, through unsafe sex, by needle sharing or by giving blood. HIV is not passed on through casual contact.
What to expect
HIV infection affects people physically and emotionally in different ways. Physically, some people feel little impact of the virus for many years. Others feel the effects of HIV almost immediately after infection and have a series of other infections and illnesses from then on. Many people with HIV exist between these extremes, having occasional illnesses and physical problems and experiencing long periods without illness or discomfort.Emotionally, the impact of HIV also varies. Some people put their HIV infection into the back of their minds and carry on as before, others find it difficult to ignore and experience it as a central part of their life.
If you have some understanding about the way in which the person you care about experiences HIV you will be in a better position to provide support. Don't try to imagine how you would react—that's important for your understanding of yourself but may not be of much help in your caring. Try to listen to the person you care about so that you can better understand their experience of living with HIV.
Tests and monitoring
There are several blood tests which are used by people with HIV to monitor their health. The CD4, or t-cell count, is used to see what effect the virus has had on the immune system. If the immune system is damaged the CD4 count drops. Generally, if the count drops below 250, the person with HIV is at risk of contracting other infections.
The HIV Viral Load test is used to show the amount of HIV in the bloodstream. This gives the person an idea about how much virus activity is going on and about how effective their treatments are. In order to make decisions about treatments, the viral load has to be read in conjunction with the CD4 cell count.
People with HIV are generally advised to have CD4 and viral load tests every three months. More frequent monitoring might be necessary if the person is starting or changing treatments or developing symptoms.
See also: Monitoring your health
About treatments
There have been lots of advances in HIV treatments over the last decade; however, the drug therapies that have brought about these advances can have severe side-effects and do not necessarily work for everybody.
The new treatments come in the form of a series of antiretroviral drugs that are used in combinations of two, three or four at a time. This is called combination therapy. There are a number of different drugs available at the moment. If one combination does not work, or produces severe side-effects, it may be possible to switch to another combination.
Starting and staying on combination therapy is an important decision for a person with HIV as some of the drugs may need to be taken several times a day. For treatment to be effective, it is important that the person does not skip any doses. This makes the treatments quite a burden for some people and they can act as a constant reminder of their HIV status.
See also: HIV treatments
As well as combination therapies, people with HIV are often prescribed a range of other drugs to stop them from getting opportunistic infections and to treat existing infections, symptoms and drug side-effects. As the immune system breaks down, it is harder for the body to fight off infections that a healthy body can easily manage. Many of these illnesses can be avoided by taking prophylactic medication.
The most common opportunistic infections are PCP (a type of pneumonia or lung infection) and MAC (an infection that mostly affects the gut). Some people with HIV combine their combination therapies with complementary therapies such as acupuncture, massage, vitamin supplementation, Bach flower remedies etc.. These may help relieve symptoms and side-effects and may have their own independent beneficial effects.
It is important that the person with HIV let their doctor know about their complementary therapies in case there are any reactions with their antiretroviral therapies.
See also: Side effects
Is it safe?
HIV is a communicable disease: that is, it can be passed from one person to another. It is not contagious like some other infections, though, meaning it cannot be passed on through casual contact or by caring for someone with HIV. HIV is usually passed on during unprotected sex (sex without condoms) or by sharing needles when injecting drugs. Caring for a friend with HIV or having a family member with HIV does not put you at any risk unless you have unprotected sex or share needles with them.Fear of infection has led to rejection of people with HIV by family members and friends. People sometimes feel less inclined to hug the person or to touch them in the way they used to. If you are feeling uncomfortable about having contact with your friend or family member try talking to them about it, or perhaps to a counsellor. Your local AIDS council or PLHIV organisation can provide support for you and for the person you are caring for.
Who’s around?
Everybody organises the people in their lives differently. Some keep family members and friends quite separate, rarely providing opportunities for them to interact. Others live in extended families where friends, brothers, sisters, parents and partners all know each other and mix regularly.For those who keep the people in their lives in separate groups, the onset of illness can mean that everyone gets to meet each other for the first time and often under quite stressful circumstances. This can be a very difficult time. Parents sometimes compete with friends to try and show who cares for the person the most.
People can blame each other for the person’s illness. This is a good time to remember that the person with HIV needs your care and support and that there is usually plenty of room around the person for everyone. Try to take a step back and let everyone play their part. It’s not a competition.
Who’s the boss?
One of the most distressing things about living with HIV is the gradual loss of independence that sometimes occurs. As people get sick, they can often experience high levels of anger, frustration and depression.
There are several ways you can help to maintain your friend or family member' s independence:
- Make sure that the person with HIV has as much control over the decisions that affect them as possible
- If their decision-making becomes impaired, be sure that they are allowed to contribute to the extent that they can
- Involve them in all discussions about their care
- Find out from them what help they want and what they would prefer to do for themselves
- With the person' s consent, get some help from the community nurse or occupational therapist to arrange things in the house so that they can do as much for themselves as they want to
- Try not to take over —even if you think you know better.
What’s around?
People with HIV make use of a range of care and support services. As a partner, friend or family member, you may become involved in supporting them as they make use of these services.Many people with HIV are monitored either by a GP who understands HIV disease or by a specialist at a hospital outpatients’ clinic. Some use a combination of both. They may get support from individual counsellors or from peer support groups—groups of people with HIV.
People with HIV who are sick and being cared for at home often use a combination of community nurses, family members, friends and AIDS council volunteers to provide their care. They can borrow medical equipment and use services like Meals On Wheels to help provide care. Where hospice services are available, people with HIV can use these to help with care at home, provide them with care in the hospice or provide them with respite care (i.e. a short stay in the hospice to give the home care team a break).
What about you?
Caring for or providing support for a person with HIV can be hard work, both physically and emotionally. It can also be really rewarding, bringing you closer to the person you are caring for.You’ll provide better care and support if you are looking after yourself at the same time. Here are some suggestions:
- Find someone you can talk to about the caring you are doing without compromising your friend or family member's privacy
- Maintain your own friendship network
- Get an emotional support volunteer from your local AIDS council
- Be aware of your consumption of alcohol or other drugs
- If the person you are caring for is sick, get help from volunteer carers or a respite care facility like a hospice
- Be clear about what you can and cannot do, communicating clearly and openly with the person you are caring for
Who should know?
People with HIV still experience discrimination and stigma in Australia. Some people still fear that the person with HIV somehow poses a threat to themselves or their families. In Australia, HIV has been mostly linked with gay men and injecting drug users; groups that also experience high levels of discrimination.It is important for people with HIV that they are in control of who knows about their HIV status. Like everyone, people with HIV have diverse networks of friends, family members and work colleagues. Not all these people need to know about the person's HIV status.
In seeking support for yourself, you need to take care that you do not accidentally disclose information about your friend or family member. If you are asked about the HIV status of the person you are caring for it is often better to refer the person asking to the person you are caring for so that they can be in charge of who gets told what. If in doubt, talk to your friend or family member about how they want their privacy protected.
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