After the meeting with Dr. Jane Aaronson last week, I began to think more carefully about my research, and how it can contribute to the work of WWO.  Both nurses that work with the pediatrician have told me that they are interested in creating a mental health work group for children and that the information that I collect will help them with creating a mental health group.  Today, the VCT counselors told me that a guide for disclosing the status to older adolescents and children would be very helpful.  However, the more I shared my findings with the staff, the more I realized that the results of my research will merely confirm what they already know.  The responsibility and emotional burden I had felt when I finished interviewing crying mothers turned into a sense of guilt for failing to bring results that could really make a difference in the WWO clinic’s psychosocial services offered to children.

Wondering how I could improve my study, I revisited the scholarly article on the impact of the disclosure of HIV on the mental health of children and found a new article on the policy on disclosure of HIV status set out by the American Academy of Pediatrics.  Reading these articles, I was struck by the similarity of challenges in disclosure of HIV found in the states and the stories that I have heard in the first twenty interviews with the child-guardian dyads.  I could match up the faces of the children and their guardians who shared with me the challenges they experienced with the findings I read from the American Academy of Pediatrics policy paper.  However, I also realized that there was one major difference: the cultural perceptions on the rights of children.  Having had worked at the Office of Child Support Enforcement in Washington D.C. earlier this summer, I was well aware of the importance placed on children’s rights in the U.S.  On the other hand, the interviews with child-guardian dyads and the WWO clinic staff have informed me that children are not given such independence in Ethiopia.  Such cultural difference makes it more difficult to advocate for children’s right to know their status.  Although the American Academy of Pediatrics policy paper clearly states that medical personnel have an important say in the disclosure of HIV status to children – especially those who have reached school-age – the WWO clinic staff does not have such influence.  Despite the staff’s recognition of the importance in disclosing the HIV status to the children, their influence is limited to encouraging parents to tell their children.

Today, I did some research on the WHO website on VCT counseling.  I was disappointed to find that there was no guidance on how to disclose the status to the children.  What I did learn was the importance of keeping with ethical standards and cultural sensitivity in implementing VCT counseling particularly in developing countries.  In relation to the children, the guides referred mostly to the importance of preventing mother-to-child transmission, but little on the counseling after mother-to-child transmission.  How can counselors help fathers and mothers cope with the fact that the child now has a life-long disease, potentially due to their decision?  How can adults respond to children who start questioning reason for taking pills twice a day as early as six years old?

From the first twenty interviews and the anecdotes that I have collected from the WWO clinic staff, a guide for disclosing the status to children could reduce the stress for both the parents and the children, as well as help the counselors provide effective advice consistently.  The first twenty interviews also allowed me to see what types of factors could be associated with a successful and least stressful disclosure to the children.  Compared to children in orphanages, children in the community tend to have more difficult time finding a support network or receive effective advice and counseling.   Moreover, the reason for disclosure may impact the children’s ability to cope with this new knowledge of their status – children who find out as a result of the death of their parent(s), for example, must deal with several sources of psychosocial stress at once without the necessary support.  For some children, having support from their peers, other relatives, or religious leaders can truly improve their ability to cope with the shock and stress of knowing about this status.

These preliminary findings, however, are merely anecdotal – stories that are well-known and familiar to the WWO clinic staff.  With this realization, I have decided to change my study in order to obtain more standardized results from the interviews that can be analyzed in a more sensible and uniform manner.  For example, based on the anecdotal data, I have chosen several reasons for disclosure and changed the open-ended questions to choice-based questions.  I have also expanded the section on disclosure to allow each guardian to speak about every essential element of the disclosure: the age of the child at the point of disclosure, the person who disclosed the status to the child, the emotional state at the point of disclosure and at the present concerning his/her HIV status, etc.  Although I now have less than four weeks to use this revised questionnaire, I believe that the results of this study can be more useful to the WWO clinic staff, and even be used for statistical analysis.

I have so far shown this questionnaire to the nurses, the VCT counselors, and the medical project director, in order to receive feedback.  This was another opportunity for me to see that the WWO clinic staff members have so much knowledge about the psychosocial needs of their parents, are innovative thinkers, and already do so much for their clients.  Even on days like today, when I did not have anyone to interview, I could never be bored or simply sitting in my office – the nurses and doctors call me to their offices to engage in another great conversation and learn from one another.  Although I often worry about the small number of interviews ted with the revised questionnaire and the little time I have left, the diligence, great compassion, and encouragement from the staff inspire me to maintain the confidence and faith in my research project.

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