My interviews and informal discussions with the staff at the WWO clinic have been absolutely invaluable to investigating ways to reduce psychosocial stress experienced by children with HIV/AIDS. At the beginning of this week, I was unsure how the results of the interviews with children and their guardians could contribute to the clinic’s services and benefit the interviewees. Every time a guardian opened up to me and shared such incredible stories even through the tears, I felt uncomfortable with my inability to explain how their participation will lead to concrete results and help for their children. I wanted to be able to say comforting words, but without any experience in counseling, I could only continually thank in my broken Amharic for sharing such painful memories to a foreigner like me.

Two days ago, I interviewed a single-mother and a son, who were the first among my interviewees using a public water source (instead of pipe water) and living in government housing for people in extreme poverty. The child was one of the youngest I have interviewed – 12 years old. And yet, their stories, the close connection between the mother and the child, and their ability to engage in positive living left an impression unlike any others. The mother told me two very distressing stories. On one New Year’s Day, she had invited many neighbors to have a modest celebration. One girl in the neighborhood, who somehow found out the HIV positive status of her son, told everyone at this party that the boy was HIV positive. Soon after, all of the neighbors left, refusing to eat with someone who is HIV positive, leaving the mother and the son to spend their New Year’s Day alone… The second story was of how the child had found out about his status. When he was younger, he helped out his mother by running errands for his neighbors for some modest tips. Although his mother kept telling him to stay home, afraid that her son may hurt himself, the boy continued to work while the mother was gone during the day. One day, she found that the boy had fallen down, got a deep gash on his arm, and went to the hospital by himself to get stitches. Her worst fear had come true, and she could not keep this information from him any longer. The mother told us that when she disclosed his HIV status, she was surprised the boy was not angry at her, and just asked why she did not tell him earlier. These stories clearly showed the love and constant worry the mother had for the son and the son had for the mother. When the son was invited to the interview, he saw that the mother had been crying. He was one of the first children to tell me that one of his three favorite things to do is to spend time with his mother. Surprisingly, he also willingly shared with us that he came to the clinic because he had ‘the virus.’ Such willingness is really significant, because many children who know are unable to openly talk about their status, because they are not used to talking about such things even with their parents.

This story left me with a strange mix of complex emotions – awe at this amazing bond between the son and the mother, helplessness from my inability to help them or say comforting words, and disappointment at my own project that seemed to have no focus or concrete hypothesis. However, Yayehirad and Antena – the pharmacists – whom I interviewed later that afternoon, gave me a new sense of purpose. Despite my inability to completely understand mental health norms of children in Ethiopia as I described in my last blog post, they were curious how I could contribute with my outsider’s knowledge. How do the American parents disclose the HIV positive status to children? What are some coping mechanisms available to children in the U.S.? What sorts of support networks are effective in helping children deal with the psychosocial stress in societies with strong stigma against HIV/AIDS patients? Even though the cultural barrier will prevent me from fully understanding mental well-being of children in Ethiopia, I can identify ways to improve the current support networks and guidelines for disclosing the HIV/AIDS status to children. I was so grateful to find that the WWO staff were so highly concerned about the children’s emotional well-being and interested in helping me find concrete results of my project.
Worknash, the nurse who currently leads adults counseling groups and helps with HIV/AIDS status disclosure to adults, has also been incredibly helpful. In addition to providing a private space for me to cope with some of the difficult stories that I have heard, she has taught me the value in sharing one’s own experiences and learning from other’s experiences. She says that the Ethiopian society is very conservative – the children are dependent on their parents until marriage, and people do not openly share their problems with their neighbors or even the relatives. In such a society, it is difficult for parents to disclose the status, because they are afraid that the children may spill this secret to their neighbors. Moreover, as the children are dependent on the parents, the children do not have ‘rights’ as they do in the U.S., and cannot know their status without the parent’s consent, let alone get a test to find out their status. Such cultural values and the parents’ sense of guilt for the HIV positive status of their children present many barriers to disclosure of the HIV/AIDS status to the children.

Through my everyday encounters with the parents and the WWO staff, I am learning that these cultural boundaries are crucial for the stability of their family and social life. However, I believe that there may be ways to help the parents with this disclosure process. Worknash told me that in the adult counseling groups, some parents shared with the others in the group the benefits of disclosing to the children and getting them tested for the status. Even though this is a very emotionally difficult process, many others in the group took this experience as a lesson and brought their children and their spouses to the clinic to get tested. From the stories that I have heard from the children and their guardians, I believe that support groups for disclosing the HIV status to the children in their adolescence can be helpful. The story of the mother and the son explained above is one example of how disclosing the status brought the child and the mother closer together. This is one example of a family that can show others how disclosure can help both the child and the guardian better cope with the life-long stress of being HIV positive.

Other stories have shown that many children come to know their status years before the parents decide to disclose the status, because of the daily dose of medication and the posters they see on the walls of the WWO clinic. As a result, it is clear that not disclosing the status only blocks the communication and emotional support that both the child and the mother could provide for one another. Thus, I believe that support groups composed of the children and their guardians could also provide a network for the children to discuss their own issues. Although there are official guidelines to help adults identify sources of emotional support, there are no such guidelines for children. This is especially detrimental in the Ethiopian society, where children do not have the same emotional support from parents, who must expend all of their time and energy to financially supporting their children. I hope that by creating a support network among child-guardian dyads, the children and the parents can learn from each other ways in which the families can cope with the psychosocial stress associated with HIV/AIDS. More importantly, children in the community – who do not have the communal atmosphere of orphanages – can also find peers with whom they can speak to about their HIV status without being discriminated against.

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