Vicki Harrison
The psychological aspects and stigma associated with Children with HIV/AIDS epidemic shall be looked upon in this paper.
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Statistically, in 2010, an estimated 3.4 million children younger than 15 years were living with HIV and 1.2 million children and adults died from the disease in the same year.[1] HIV/AIDS makes a huge psychological as well as physical impact on the persons infected with HIV and their caretakers. Due to the increase in the number of HIV infected patients, the psychological effect is greater, affecting a larger population.
HIV/AIDS is still viewed as a terminal disease rather than a chronic illness. It is still believed in many parts of the world that HIV/AIDS is followed by death. However, with the advancement in medicine and availability of treatments like antiretroviral therapy, HIV has now shifted towards a chronic disease rather than a terminal illness. This means that the life span of HIV/AIDS patients is longer than those affected with terminal diseases. Because chronic illness persists for a longer duration, the patients and their caretakers go through psychological stages. Generally, these stages are based on Kubler-Ross model[2] on death and dying. This model has the following stages:
Denial and isolation
This stage deals with the initial diagnosis of the disease. It is human psychology that we tend to react to any adverse situation by denying it. It is a defense mechanism to delay immediate shock. The human brain tends to absorb the terrifying situations by blocking it out. Kids and adolescents with HIV often think that their disease and everything related to it is just a bad dream which will end soon. They stop socializing in their surroundings; meaning thereby that kids refuse to go to school and behave awkwardly. They try to hide from the facts and act as if nothing’s wrong. Adolescents stop communicating with their parents and other caretakers. This is an initial reaction to get through the first wave of pain. Patients also become nostalgic of the times when they were happy or playful or as matter of fact any period before knowing that they had HIV. And nostalgia is nothing but denial – denial of the present.
Anger
After denial and isolation, the reality and pain start to resurface not only for the patient but also for his caretakers. The intensity of the situation starts to arise and this intensity is expressed in the form of anger.
This stage includes the disclosure of disease’s implications and the difficulties resulting from long term care, including financial and emotional strain. The perceptions surrounding HIV makes the disclosure of the disease negative. Also, explaining kids and adolescents that their life is about to change and that they are not normal is the one of the worst things that could happen to them. Let us take a 5 year old child; she would want to be like other kids- playing with other children, eating chocolates, going to school etc. but having HIV/AIDS will restrict her from doing that. Another example could be of a 13 year old boy; he would want the stamina to play sports, go to school regularly, make friends and gel in with them. However, the disease would restrict his growth, he would have to regularly visit doctors and his health will be affected majorly. Till adolescence, the main thing that kids want is to be normal, like everyone else and to not be weird. So having HIV affects these kids in a huge way.
HIV requires adherence to a strict medication regime which is highly stressful on both the patient and the caretakers. To prevent resistance, the child must take the medications with a greater than 95% rate of adherence[3]. Rigorous medication and deteriorating condition creates frustration in the minds of the patient.
The family members or care takers have an emotional and a financial burden. The heavy expenses of the patient force them to work more in order to ensure that the expenses are met. But they also have to take care of the child’s routine and medication regime. This process leads to frustration and ultimately to anger. Oftentimes family members fall into the pattern of “miscarried helping.” In miscarried helping the family members feel the overwhelming need to help the patient with the medication regimen and thus their helping is in excess of what is required. During this process, they may invoke negative feelings in the patient by telling him that it would lead to bad consequences of he doesn’t take his medicines or that he is not a good boy if he denies the routine. Over the years, the patients feel the pulsating need to free from the family members and the medication regimes. He gets overwhelmed and rebellious. The patient is frustrated and angry at this stage.
“It all seems so fake; this idea that good things happen to good people.
There are too many prayers that go unanswered. Every day we ignore how completely broken the world is, and that it’s okay but it’s not okay.
And once you know that there is no going back.
There is no magic in the world”
Depression
Children living with HIV are twice as likely to be diagnosed with major depressive disorder. Patients have to adjust according to the illness and the treatments for it. HIV affects the child’s independence and the way that the patient views the world and himself. The drastic and sudden change has an enormous impact on the patient’s mind and the very idea that death may come anytime soon scares him. The child has a psychological reaction to the difficulties faced by him due to the illness. Children with HIV have decreased social functioning as compared to their peers. This decline in peer relations indicates the child’s increased difficulty in managing his illness. This is seen as the child grows older and the illness takes its toll on the growth and development. There is another concept called ‘burnout’. Burnout is when the child reaches his/ her limit. He is completely frustrated with the medical regimen and the burden to maintain greater than 95% adherence. This frustration may lead the patient to depression. The patient has given hope and thinking about death or the illness just makes him wonder about how his life is very different from others and what did he do to achieve this. Suicidal tendencies may also arise during this stage.
When facing their own death, many experience what is known as anticipatory grief. Anticipatory grief is a grief process that a person undergoes before any loss actually occurs[4]. The patient is still alive but he starts to grieve before his death. Often, people experiencing anticipatory grief will project their feelings onto others. For example, children who are dying may be more afraid of their caregivers’ dying. They will panic at the thought of anything traumatic happening to their caregivers, when in fact they are afraid of their own death and what will happen to their loved ones when they are gone.
Death
Children may show signs of their fate through symbolic art and play. Their drawings may consist of accidents happening or a flood killing people. This symbolizes their fear of death by a force. They may pretend that toys are dead and actually create scenes where they die. Children feel loss of control over life. They show regressive behavioral patterns and become isolated, withdrawn, irritable and quiet.
To help children face this oncoming event, they must have the opportunity to express what they are feeling and to ask questions about what might happen. Open ended questions like “what is on your bucket list?” or “what do you think will happen after death?” Children should be allowed to participate in decisions affecting their care at the end of life. They are the best resource for determining what they want and how much they can tolerate in the end stages of their disease.
“No denial of truth will ever invalidate it” –Nikki Rosen
Although the Kubler-Ross model is for death and people suffering from terminal illness, it is still very much applicable for HIV patients. Even if HIV is now slowly shifting and becoming a chronic illness rather than a terminal illness, the threat to life is very much there. The treatment and medicine doesn’t guarantee cure and patients have to accept that death may come at a later stage.
Stigma surrounding HIV/AIDS
“The epidemic of fear, stigmatization and discrimination has undermined the ability of individuals, families and societies to protect themselves and provide support and reassurance to those affected. This hinders, in no small way, efforts at stemming the epidemic. It complicates decisions about testing, disclosure of status, and ability to negotiate prevention behaviors, including use of family planning services.”[5]
Stigma is a negative, moral, or judgmental definition of a person or social situation, often connected to discredit, disgrace, blame, and ascription of responsibility for the conditions.”
The stigma that a person carries can alter how he or she perceives and interacts with the world, even affecting how a person thinks and feels about him- or herself as an individual. Stigma surrounding HIV/AIDS is not particular to one generation or one part of the world.
Three concepts are helpful in understanding stigma as it relates to the pediatric HIV population: associative stigma, internalized stigma, and stigma management.
Internalized stigma occurs when the child gains knowledge about the society’s negative views and internalizes it. He collects this information through communication with relatives and friends, Television etc. These children are influenced by the views of the society well because they are children. They learn about the world through the people around them. So these negative views about HIV/AIDS damage the child’s self-esteem and he starts to consider himself weak and a negative sense of self worth develops. Internalized stigma has a large effect on the pediatric population through its influence on parents’ decisions to disclose. If parents or caregivers have internalized the stigma and negative views of HIV/AIDS, their likelihood of telling the child about his or her diagnosis decreases significantly. If adolescents internalize the stigma regarding their diagnosis, they are more likely to become depressed and engage in denial regarding their HIV status. Adolescents may fear disclosing their status to others and feel shameful regarding their condition.
Stigma is associative when it affects people because of their association with a stigmatized person, such as a person living with HIV. Associative stigma may affect caregivers who help care for infected children or affected children whose parents have died from the disease. Children may be affected by associative stigma if their parents are publicly known to be infected with HIV. Other examples include being friends with an HIV-positive person and attending a social or fundraising event aimed at people living with HIV.
In December 1998, Gugu Dhlamini was stoned and beaten to death by neighbors in her township close to Durban, South Africa, in the wake of talking transparently on World AIDS Day about having HIV.[6]
Stigma management basically means knowing about the possible negative views and reactions of the people and finding ways to minimize them or finding ways to stop it from affecting you. HIV patients living with stigma management practice limit the number of people they disclose to in order to minimize the chance of negative reactions or rejection.
To safeguard a child from experiencing stigma, caregivers often practice stigma management and delay disclosing the child’s diagnosis to the child. Between 25% and 90% of school-aged HIV-positive children are unaware of their own HIV status. Some caregivers feel that if children are unaware of their diagnosis, they are less likely to tell the wrong people. Other caregivers feel that if children know their diagnosis, they will internalize the stigma and give up hope. In this way, stigma leads to an atmosphere of secrecy within the family that the child often senses. Children become acutely aware of parents’ feelings toward their diagnosis, through observing interactions with other adults and how they discuss, or avoid, the topic in their presence. Labeling the diagnosis as a secret that cannot be discussed serves only to increase the stigma. Many parents are also afraid to disclose the child’s HIV-positive status because of deep feelings of guilt or shame. The parents may feel guilty about their role in infecting the child and fear that the child will become angry or blame them. Caregivers fear that disclosure of HIV status will eventually lead to questions related to modes of transmission for the adult, which may involve discussing family secrets such as infidelity or drug use.
Patient families need to be supported and educated, along with their communities. Through basic education about the virus, how it is transmitted, and treatment options, much of the stigma surrounding HIV/AIDS can be dispelled. With knowledge, long-standing myths and rumors can be laid to rest and the truth regarding HIV can replace fear and ignorance. Through educating the community at large, families and children infected with and affected by HIV/AIDS can receive much-needed support and will no longer feel alone in their struggle.
