Human immunodeficiency syndrome (HIV) has been known for over 25 years. It affects people in every country in the world. The United Nations estimates that as of 2006 there are 39.5 million people worldwide with HIV. Each day the disease affects more individuals, families and communities. In the U.S., it is thought that up to 1.2 million people are living with HIV.
HIV is increasingly recognized as an illness that affects couples and families, and not just the individual. This is not only because the virus can be passed on from one person to another, but also because for every person infected with HIV, there is a family and community that are also affected.
HIV is a blood-borne virus that can be spread through unprotected sex, sharing drug-injecting equipment and to a child during or shortly after birth from an infected mother. HIV cannot be cured, but can be managed by a combination of medications. However, if left untreated, the condition can progress until the person develops AIDS (acquired immune deficiency syndrome). Immune systems that are compromised are unable to effectively fight infection. People are then susceptible to a range of infections and can die from these.
Early diagnosis of HIV and the advances in treatment have meant that people are able to live longer. HIV testing involves detecting antibodies in the blood. When someone is first diagnosed HIV positive, their physician will take more blood tests to assess how the immune system is working (CD4 count) and how much active virus is present in the blood (viral load). These will help the doctor and patient decide when to start treatment.
While there have been important medical advances in the treatment of HIV as well as the prevention of its spread, there are still emotional and social problems that can be as hard to deal with as the illness itself. For many infected people, it is a stigmatizing condition, which makes the burden of illness more difficult to bear. Lack of information about the disease and how people are infected can lead to risk taking that can lead to infection.
How Does HIV Affect Families?
As with other chronic illnesses, partners and families often provide most of the physical and emotional care. This can place a great strain on them. This can lead to individual stress and tension between members of the family.
- In relationships, the diagnosis of HIV may reveal aspects of a person's behavior that they may have wanted to keep private. This may include infidelity or sexuality (such as male homosexuality) or intravenous drug use. This can result in feelings of guilt, blame and lead to a relationship breakdown.
- The family may also have to face bereavement.
- With HIV, more than one person in a family may be unwell which can add to the burden of care and cause additional emotional and financial problems.
- Stigma and discrimination may mean the diagnosis is kept hidden. This can prevent wider support from extended family or the community.
- A family with an infected child will have to consider when and how to disclose this to them.
- Problems can arise where there are conflicts with people's religious or cultural beliefs about medication.
- Parents may find it difficult to discuss sexual behavior and risk with their young children. This could have prevention implications for the next generation.
- When a child reaches adolescence, problems can arise regarding regularly taking treatment and safe sexual behavior.
- Poor access to information can result in people not taking their medication as prescribed by their physician or not coming to the hospital regularly. People in families may disagree about the best course of treatment.
- The stress of living with HIV causes some people to suffer from mental health problems such as anxiety and depression.
How do you know when to seek help?
Despite the initial shock of diagnosis, most people are resilient and generally manage their HIV infection well. There are times where this becomes more difficult and help is needed. The mistake would be to not recognize this and feel that you have to cope on your own. There are a number of situations where you might want to seek the services of a therapist.
- If you have concerns or worries about being infected with HIV
- Before and at the time you have a medical test for HIV
- At the time of a new diagnosis of HIV
- When deciding how to tell others
- When you think you may have contracted HIV
- When HIV is causing difficulties and tensions in your relationships
- When you struggle to cope on a daily basis
- When you find it hard to cope with medication and feel like stopping
- If you are having difficulty making significant decisions like whether to have children, change jobs or start a new relationship
- If you have trouble deciding when or how to tell your children about their HIV diagnosis
- There may be different times during the lifespan of your HIV when you will need help to decide how to move forward, such as moving from children's to adult services
How can marriage and family therapy help?
Now that people in treatment live longer with HIV, complex social and emotional needs may emerge that require specialist intervention. Family therapists are trained in working with families where one or more members face a chronic or life threatening illness. They also have special skills in helping people to cope better where there are tensions, secrets and communication difficulties in the family. They are ideally suited to working with individuals, couples and families dealing with the long-term impact of living with HIV. Many therapists have expert knowledge in helping people disclose their illness to other family members. Some will have extensive experience working with couples in same sex (gay or lesbian) relationships. They can also help people who are not infected, who are worried about their own risk, or help people concerned about a loved one who has HIV.
What interventions are used?
- Clients can go and see a therapist on their own, with a partner, or together as a family.
- The therapist would make an assessment of the individual, couple or family's needs. Where children are involved, he or she will respect the wishes of the parents before including the children in sessions.
- Families coping with serious illness can feel stuck and not know how to move forward. Family therapists can assist in helping find ways to challenge this and find new methods of coping. Therapists can provide an open, caring and non-judgmental environment to do this.
- Therapy sessions can help the family plan for events that might be difficult to talk about such as illness, hospitalization, or telling children about HIV infection.
- Conflict resolution and problem-solving techniques used in sessions can help everyone cope better.
This brochure written by Robert Bor, Amanda Evans, and Debbie Levitt (Royal Free Hospital, London, UK).
Use the AAMFT Consumer Update "Families Living with HIV" pamphlets to market your practice.