Chapter 13“Children and Young People Affected by

AIDS”

By: Diane Duggan

AIDS and HIV

• AIDS= acquired immune deficiency syndrome• It is a public health threat that infects 40,000

people each year• AIDS is caused by HIV (human

immunodeficiency virus)• AIDS is filled with uncertainty

AIDS and HIV

• People initially have no unusual symptoms– when symptoms start they include profound

weakness, severe diarrhea, and visible skin lesions• For those who do not receive proper medical

treatment, the virus gradually destroys their immune system

• AIDS first emerged among gay males, followed by injecting drug users negative feelings associated with this disease

Treatment

• In the early years HIV took an average of 8 years to progress to AIDS

• In 2002 38 % of all HIV infections progressed to AIDS within 12 months

• Antiretroviral combination drug therapies prolong and improve the quality of life for people affected with HIV/AIDS

• Therapies slow down the mortality from AIDS• Treatments do not kill the virus and there is still no

cure

Statistics

• At the end of 2003 1-1.2 million people in the US over the age of 13 were living with HIV/AIDS (24-27 percent of this were unaware of their infection)

• Studies indicate that the problem of HIV/AIDS- affected children is much larger than recognized

• In 1998, The New York Times reported that mothers of 30,000 uninfected minor children had died from AIDS just in NYC alone

• 60 % of women living with HIV have children opposed to just 18 % of men

Statistics• African American and Latina

women account for 79 % of women living with AIDS in the US

• In 2001 AIDS was the fifth leading cause of death for women ages 25 to 44

• In the early years more women (71 %) acquired AIDS through injecting drug use than through heterosexual contact…in 2003 this statistic was reversed with 79 % acquiring it through heterosexual contact

Problems faced by HIV/AIDS-affected children

• A parent with a chronic disease causes great distress for their children

• An ill parent requires increased emotional support, time, and money so the availability to supervise their children is limited (the household mostly revolves around the parent’s health)

• There is an increasingly high amount of stress placed within these families

• Children affected by AIDS see themselves as damaged, inferior, and different

• Children feel shame and dread returning to school because they do not wish to be questioned by peers

• Majority of parents with AIDS do not tell their children about their diagnosis for the fear that it would cause them to become depressed or act out

• Parents telling their children about their illness can have many ramifications and there are legitimate reasons they may choose not to reveal the nature of their illness– Do you think this is right? What would you do?

Custody• Both children and parents need to address issues of

custody ahead of time– Usually extended family members or older adults willing to

take them in; sometimes children become orphans• Teenagers tend to act out more in terms of unprotected

sex and more sexual partners if they knew their mother had AIDS and no custody plans had been made for them

• When plans are made these children have better outcomes in terms of fewer sex partners and less unsafe sexual behaviors

Bereavement

• When children lose a parent to AIDS it is important they are helped to mourn their loss

Process a grieving child goes through1. Denial2. Physical discomfort from the separation of a loved one3. Lack of interest in future

~ Thoughts of suicide…because they think of death as a way to reunite with the loved one

4. Resolution : able to accept the loved one’s death

Behavior Problems• Include depression, learning problems, and risk-taking

behaviors• Studies found children’s behavior problems were related

to the psychological distress experienced by the mother• Expressions of anger may make them feel a sense of

power that counteracts their feelings of helplessness• Youth often act out in very self-destructive ways that

result in truancy, arrest, staying out all night, etc.– Because of parents’ impending death, they express reluctance

to jeopardize their relationship with their children by disciplining them

Academic Problems

• The stage of the mother’s infection and the child’s attendance appear to play a role in the children’s grades

• Children show many problems with memory, learning, interpersonal relations, and impulse control

• However, youth who have already lost a mother to AIDS want to do well in school because it’s important to their late mother they graduate

Childbearing• A study on three teens reported that all three became

parents within a year after their parents’ death to AIDS• They said having babies seemed to fill the holes in

their lives by their loss• They more then likely engaged in these behaviors

because of stress within the family… stigma of the disease, secrecy around it, poverty, and fear for the future

• These teens need support and education in parenting; someone they can rely and depend on US

I knew. I just wanted her to tell me. She couldn’t say it. And the more she couldn’t say it, the more I couldn’t take it. I just waited and waited. The more I waited, the angrier I got.

-- Maria

Young people who are affected by AIDS through their parents’ illness/death face conflict, anger, dislocation, difficulty with disclosure, and loss.

--Imagine their everyday lives, how can we help?

My mother is living with AIDS. I worry about her, but she doesn’t know. Shethinks I don’t love her. She gets stressed out and blames things on me. I think she’s taking her anger out on me. I can’t take it anymore.

-- Annette

Schools provide stability

Caring

• School staff needs to be educated to recognize the behaviors these students exhibit

• Schools need to develop services to meet the specific needs of these children

• Maintain a caring relationship: listen with compassion– Students can greatly benefit from the attention of sensitive

teachers– Reach out, engage them, and provide support and referrals

(offer interventions to help these kids cope with their parents’ illness/death)

Tribute to loved ones

• Formal services can help mourners find meaning and cope with the pain of the death of a loved one

• Art can also help them display their feelings• A group of AIDS-affected teenagers in the

South Bronx created an AIDS quilt– This provided a forum for the affected youth to tell

their stories in a personal, but anonymous way– Gives support for one another

The truth about HIV/AIDS

http://www.youtube.com/watch?v=BTe-KGR7078