HIV/AIDS Orphans

HIV/AIDS Orphans:

Robert Brown and an Army of Child Survivors

Recently, I went to the NAMES Project Foundation and picked a panel from the AIDS Memorial Quilt. I chose panel 1 of block 4994. This panel was made in honor of Lisa Brown by her son, Robert Brown. This AIDS quilt panel draws attention to the forgotten child survivors of HIV/AIDS victims. These child survivors like Robert lack representation in research and suffer from a multitude of burdens before and after the death of their parent(s). This panel speaks of the loss these children face and shows how one boy works to cope with and understand what has happened to his mother.

The center of the top half contains a circle divided in four quarters of color, the top color is baby blue, the east color is a forest green, the west is white, and the bottom color is bright cherry red.  In Robert’s letter, he said that the pinwheel is made to represent life, each color represents aspects of nature: red- the sun, blue- the sky, green-the grass, and white- the clouds. At the center of this circle is where Robert believes his mother’s spirit is located.

The spaces above, below, left, and right of the circle depict naturalistic predatory birds. These birds appear to have been painted or printed on a separate piece of fabric that they have now been cut out of and glued to the background material. The birds to the east and west of the circle facing away from the circle in mid-flight pose. The southern bird is slightly larger with a landing pose. The eyes are slightly darker and larger than the side birds. Its colors are white, sandy brown, black, and dark gray. The biggest bird is the northern bird with the most details. It’s about four inches by two inches. Robert explains that the birds to the left and right of the circle are him and his sister. The bottom bird is his grandmother, who is now his guardian and the northern bird represents his mother.

In the corners, there are illustrated cloths about one foot by ten inches. On the material is a printed depiction of nature with a color scheme of grayish blues, browns, grays, black, and white. The patch in the top left corner depicts a deer landing from a jump across a river. The patch to the top right depicts a mother bear and her two cubs. The two cubs are to the right of the centered mother bear, facing her. One cub stands on its hind legs on the ground while the other is perched at the top of a tree. The patch to the bottom left is a depiction of a buffalo. The bottom right patch image is of a moose. It has a full profile view with the front leg closest to the viewer raised. The moose is standing in shallow water with a cattail plant near its mouth.

Robert never explains the illustrated cloths, but because they encircle the mother’s spirit, I believe they are Robert’s way of creating a perfect ‘heaven’ or ‘haven’ for his mother’s spirit. Surrounding her with beautiful images of nature is Robert’s way of bringing her peace. This action demonstrates the pressures these children face to protect their sick parent from the horrors of the world- they work tirelessly to give their suffering loved one a perfect life and when they lose that loved one they may feel the need to give them that perfection in death. It is very normal in our culture to want to bring peace to these lost ones, however, normally that weight is not put on the shoulders of a 12-year-old boy who just lost his mom.

The bottom half of the panel is decorated with handwritten letters and hand-drawn symbols, most likely done with markers. At the very bottom an array of symbols that Robert describes as animal tracks “leading to the spirit world.” Above these are the words “I LOVE you mom” are scrawled in blue, curving downwards towards the right like the maker ran out of room. What first drew me to this panel was the words “I LOVE you mom” written across the lower half of the panel. I could feel the shout of desperation, the longing, the need to have the mother’s spirit know that her son loves her and misses her. These words speak to me, not about the mother lost, as much as the child left behind.

Robert did not mention the multicolored words like the “I LOVE you mom” message for his mother’s spirit. This affectionate cry proves not only that the elements of this panel are meant for his mother, but also the desperation Robert faces to ensure that his mother knows how much he loves her. This panel shares the concerns of this young boy- How will she know where to go? What if she gets lost? Does she know that she is loved? Is she happy where she is? Does she finally feel better?  Will she miss me?

Robert presenting the panel in 1996 when he was 12 years old

Robert presented this panel at age 12 in 1996. A NAMES volunteer tells the story of a “tearful” Robert who struggled to let the panel go because it was like “once again he was forced to leave his mother.” Finally, Robert gave the panel to the AIDS Memorial Quilt, asking that they “put it with ‘the other mothers’’ who have died.” This drew my attention to an often-forgotten fact- HIV/AIDS has taken parents and left behind a mass of forgotten and grieving children.

In fact, there are about 16.6 million HIV/AIDS orphans and the number of these children is constantly growing globally (09 May 2018, What needs…). These child survivors of HIV/AIDS are often overlooked and underrepresented in social and psychological research. In my research, it was difficult to locate any articles or journals done on the topic. In fact, every journal I did find, mentions how unresearched the topic is and how imperative it is to increase this research.  I believe that this lack of representation is due to two main factors. For one, many people are focused more on those suffering from HIV/AIDS than those who suffer by proxy. For another, there is a misinterpretation of the term “HIV/AIDS orphans.” Many sources recognize this as children with AIDS rather than the UNAIDS and WHO’s definition of “children who lose their mother or both parents to AIDS before reaching the age of 15 years.” This misinterpretation has left the group without a commonly recognizable name. If we cannot name the group then we cannot even begin to group them and define them as a specific group of people with their own set of struggles and shared patterns.

To help in understanding these children I looked into the psychology of kids who have lost a parent to cancer. While these groups do differ in many aspects, they both lost a parent who suffered from an illness.  studies have found that these kids are twice as likely to self-harm and have more psychiatric problems such as “major depression, substance abuse, anxiety, and social withdrawal, and low self-esteem and self-efficacy issues several years after the loss.” They are also more likely to attempt or commit suicide (Bylund Grenklo T, Kreicbergs U, Hauksdóttir A, et al., 2013).

HIV/AIDS orphans face a range of burdens before and after the death of their loved one. They suffer psychologically, socially, and economically. They face a “host of vulnerabilities, often linked to the direct as well as the indirect effects of the disease, such as poverty, separation, economic decline, stigma, social isolation and community impact” (Snider, 2006). It is important to recognize that the spectrum of suffering for this group is wide because the children who lose two parents lack the support that the children who lose one parent usually have.  The surviving parent or other long-term caregiver help support the grieving child not only in the aftermath of the death but also in the months of illness and suffering leading to death. These double- orphaned children must deal with separations, economic hardships, stigma, and trauma by themselves. In most cases with these children, it has been found that “the quality of subsequent care is the best predictor of positive outcome after traumatic loss” (Rutter, M. & the ERA study team). Keeping in mind that some of these orphans face many more struggles than other, It is still imperative that we focus on the struggles all AIDS orphans face, regardless of the number of caregivers lost.

The main struggle these children face is psychological. Most studies find “a high degree of internalizing disorders such as depression, suicidal ideation, anxiety and especially post-traumatic stress” in this group (Smart, 2009). It was also found in a study on kids whose parent was diagnosed with cancer that parents commonly “underestimate the emotional difficulties that their children are experiencing …Because young people frequently hide their feelings to protect their families” (Maynard, A., Patterson, P., McDonald, F.E.J., & Stevens, G., 2013).  This is the only action the children can take to try and alleviate the parent’s pain.  They want to spare their parents as much as possible, so they put on a mask and internalize their pain to ease the parent’s pain. When I was young, I had a grandmother die after suffering from a separate medical issue for a year. When I lost my grandmother somebody told me that grieving was like floating in a stormy sea. The only thing saving you is your anchors- the people who you can rely on to be strong while you cry into their shoulders. As a child, these anchors are the grownups who help raise you- parents, grandparents, etc. They are who you have always gone to when you were sad or upset- every bruise they kissed, every tear they wiped away, every nightmare they woke you up from. But what if everyone you relied on crumbled before your eyes- suddenly they had bruises that you could not kiss away, they had tears that they had never had before, and they were living a nightmare that there was no waking up from. What does a child do when they lose their anchors? I decided that I would be their anchor- that way everyone I loved had someone to lean on and I would never find myself helplessly drifting in that sea of grief. That led to me putting a smile on my face and telling everyone I was fine. They needed someone to be strong, so I stepped in. However, for a ten-year-old, it is an impossible task to bear the burden of everyone’s grief and be constantly ignoring your own. This internalizing behavior leads to anxiety, post-traumatic stress, etc.

In one study done on what is helpful for kids of cancer diagnosed parents, it was found that telling certain people at school about their parent’s condition could “mediate the stress.”  When teachers were made aware of the child’s situation, “they were more likely to give some leeway and to support them, thereby reducing the pressures of school” (Maynard, A., et al., 2013).  However, AIDS orphans face a stigma that makes sharing this diagnoses extremely difficult. This stigma can cause further isolation and internalization while the child tries to protect the family from this AIDS stigma in our society. This lack of support HIV/AIDS orphans in America have can be further explained by the current demographics of HIV/AIDS in America.

Source: CDC. Estimated HIV incidence and prevalence in the United States, 2010–2015. HIV Surveillance Supplemental Report 2018;23(No. 1).

 

According to the Center For Disease Control, African Americans accounted for 44% (17,528) of HIV diagnoses because of higher rates of HIV in their communities and the socioeconomic issues associated with poverty such as “limited access to high-quality health care, housing, and HIV prevention education.” Because of factors like “stigma, discrimination, income, education, and geographic region,” 3,379 African Americans died from HIV disease in 2015, accounting for 52% of total deaths attributed to the disease that year (2018, August 06, HIV/AIDS). This means that a majority of the HIV/AIDS orphans live without access to helpful support networks like extracurricular activities to help them escape the disease or a stable caregiver after the parent(s) death or a sense of normalcy and stability during the disease because the parent(s) are busy trying to juggle the disease and a much-needed job (which in most cases lacks healthcare and is usually lost due to the increase of needed sick days) or even therapy for the child after the parent(s) die(s).

These forgotten child survivors lose their loved ones and childhoods to the HIV/AIDS epidemic. Their situation lacks representation in research and they become forgotten by the public. They learn to internalize in an attempt to save their hurting parent from as much pain as they can. This internalization, in turn, leads to anxiety, depression, post-traumatic stress, etc. It is important that more research is done for kids like Robert so we can learn how to help them.

 

 

“The Future is in her hands” by WAC Egypt
Now I’m calm…, by Marc Rusines
Living in a pedicap, by Wayne S. Grazio

 

 

 

 

 

 

 

Works Cited

Maynard, A., Patterson, P., McDonald, F.E.J., & Stevens, G., (2013) What Is Helpful to Adolescents Who Have a Parent Diagnosed with Cancer?, Journal of Psychosocial Oncology, 31:6, 675-697, DOI: 10.1080/07347332.2013.835021

Brown, R. (1996), Robert Brown’s letter to the NAMES foundation.

Bylund Grenklo, T., Kreicbergs, U., Hauksdóttir, A., et al. (2013) Self-injury in Teenagers Who Lost a Parent to CancerA Nationwide, Population-Based, Long-term Follow-up. JAMA Pediatr, 167(2):133–140. doi:10.1001/jamapediatrics.2013.430

Nicoe, L. (1996), NAMES volunteer letter.

Rutter, M., & the ERA study team, (1998), Developmental catch-up, and deficit, following adoption after severe global early privation. Journal of Child Psychology and Psychiatry, 39(4), 465-476.

Smart, T. (26 November 2009), After my parents died the effect of HIV on the mental health of children a clinical review. Aidsmap. Recovered at: http://www.aidsmap.com/After-my-parents-died-The-effect-of-HIV-on-the-mental-health-of-children-a-clinical-review/page/1332632/

Snider, L. (2006) Psychosocial vulnerability and resilience measures for national level monitoring of orphans and other vulnerable children. UNICEF Publications.

(2002), Children’s environmental health- Environmental risks, World Health Organization. Recovered at https://www.who.int/ceh/risks/otherisks/en/index2.html

( 2018,  May 09), What needs to be done to Fast-Track social protection to end AIDS?, UNAIDS. Recovered at http://www.unaids.org/en/keywords/orphans

(2018, August 06), HIV/AIDS, CDC.govRetrieved from https://www.cdc.gov/hiv/statistics/overview/ataglance.html

Bibliography

 Chia, P., Lia, X., Barnettb, D., Zhaoc, J., Zhaoc, G., (2014), Do children orphaned by AIDS experience distress over time? A latent growth curve analysis of depressive symptoms, Psychology, Health & Medicine, Vol. 19, No. 4, 420–432

Chi, P., & Li, X. (2013). Impact of parental HIV/AIDS on children’s psychological well-being: A systematic review of global literature. AIDS and Behavior, 17, 2554–2574. doi:10.1007/ s10461-012-0290-2

Forehand, R., Pelton, J., Chance, M., Armistead, L., Morse, E., Morse, P.S., & Stock, M. (1999). Orphans of the AIDS epidemic in the United States: Transition-related characteristics and psychosocial adjustment at 6 months after mother’s death. AIDS Care, 11, 715–722. doi:10.1080/09540129947622

Li, X., Naar-King, S., Barnett, D., Stanton, B., Fang, X., & Thurston, C. (2008). A developmental psychopathology framework of the psychosocial needs of children orphaned by HIV. Journal of the Association of Nurses in Aids Care, 19, 147–157. doi:10.1016/j.jana.2007.08.004

Rotheram-Borus, M.J., Weiss, R., Alber, S., & Lester, P. (2005). Adolescent adjustment before and after HIV-related parental death. [Research Support, US Gov’t, P.H.S.]. Journal of Consulting and Clinical Psychology, 73, 221–228. doi:10.1037/0022-006X.73.2.221

Sherr, L., Varrall, R., Mueller, J., (May 2008), A systematic review on the meaning of the concept ‘AIDS Orphan’: confusion over definitions and implications for care, AIDS Care, Vol. 20, No. 5.

Verma, S., Lata, S., (2016), Hope and Nutritional Status in Relation to Psychosocial Distress among HIV/AIDS Orphans, Journal of Psychosocial Research, Vol. 11, No. 2, 315-324

 

Also see:

Analysis of “Essay in Material Culture”

An AIDS Panel for a Mother

Ethos of Lisa Brown’s Panel

General Outline

HIV/AIDS Orphans Video