Program of Diagnostic Disclosure for Children

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In Ecuador there is a significant number of children living with HIV. Most of these children acquired the virus from their mothers, who unfortunately were unaware of their HIV status and did not receive the timely treatment to prevent HIV transmission to their child.

Since Fundacion VIHDA started working with HIV+ women, many come to us for support regarding an issue that concerns and scares them a great deal: How to reveal an HIV diagnosis to their child who is living with HIV.

Thanks to medical advances, the vast majority of children living with HIV who acquired the virus from their mothers have grown up healthy. Nevertheless, many of them do not know that they are living with the virus because the disclosure of this diagnosis is an emotionally charged issue for parents and caregivers.

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Many parents share common fears in regard to revealing their children’s HIV status. They include questions like: How do I tell my child? What is the right age to tell my child? Am I guilty of infecting him/her? Can the child maintain the necessary confidentiality of his/her status?

In general, there are many reasons why parents or caregivers delay the disclosure of diagnosis to the child. They may fear that their child will suffer social rejection, or may not want to involve the child in a complicated health issue. These are among the most frequent reasons given for delaying diagnosis disclosure.

Being familiar with this situation and the growing need to adequately address this sensitive issue, VIHDA’s health professionals have developed a Diagnosis Disclosure Program that seeks to accompany the child and family during different stages of the disclosure process. We provide the appropriate information for the child’s age, until the child eventually reaches cognitive and emotional maturity to process this information.

Based on the stages of child development and information needs of each child, the Diagnostic Disclosure Program covers various issues amicably, with educational and recreational resources that puts the child in an environment of trust and familiarity.

As this process develops, we work with the child's personal history, his/her family, their specific life circumstances, and other issues, in order to address each child’s specific needs.

Fundacion VIHDA’s Diagnostic Disclosure Program includes:

Psychotherapy for Children

This individual child psychotherapy process is performed to assess the personal situation of each child and establish a specific plan of action for each case parallel to the stages of the Disclosure Program.

Psychotherapy for Caregivers

Every family is different, just as each story is different. While children share the same diagnosis, how HIV came into their lives and other preliminary situations are different. We provide a space for parents and caregivers to receive attention and intervention in their personal HIV status, their own unresolved issues, their strengths and weaknesses, and perform an evaluation of each family circle.

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Step-by-step Education Associated with Disclosure

Our Disclosure Program is conceived to be a process, not a specific event. For this process to advance gradually, it is necessary to take into account the child's age, level of cognition, and psychosocial factors. Each stage of the program is intended for the child to approach the concepts presented in a friendly manner, without fear, slowly removing the veil of mystery surrounding his/her health situation.

Building Trust and Personal Strength in Children

Living with HIV need not be a reason for any person to feel diminished, especially when it comes to children whose diagnosis is inherited and not derived from their own conduct. The program aims to strengthen the child's self esteem and confidence as pillars in the management of their health status.

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Strengthening Peer Relationships

By the time a child discovers their diagnosis, they will have spent a lot of time with other children in a similar situation. This relationship is established so that in the future the child will have a peer support network whom they can trust and with whom they feel close.

Integrative Therapeutic Activities:

The Disclosure Program seeks to go beyond the mere disclosure of HIV diagnosis. We think that welfare and health are integral parts of development, so we developed complementary activities to enhance the general welfare of children and their families, and among them are:

Ø Group sessions with children to strengthen the relationship of peers and create recreational spaces for learning, fun and friendship.

Ø Group sessions with caregivers to share experiences in similar situations, including group psychotherapy in a relaxed environment creating a support network among them.

Ø Safe spaces for social and cultural integration of both children and caregivers through fun, culture, and the arts as part of the natural development and expression of people. We provide a safe space where people can enjoy themselves safely in the company of their loved ones.

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What’s Next?

Discovering an HIV diagnosis is not the end of the program, but the beginning of a new stage in which we accompany the child in the handling of this information and using the resources acquired during this process. Fundacion VIHDA, in collaboration with the families, hopes to accompany these children throughout their growth in all aspects.

As the children grow up and enter adolescence, VIHDA provides continued monitoring, including integration to our youth education program, “Pilas Ahi!”, and our Youth Volunteer program in which the children are encouraged to participate.

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Translated by Rachel Mestnik, Peace Corps 2014; Edited by Fundacion VIHDA

SOBRE NOSOTROS

Somos una organización ciudadana sin fines de lucro que:

Lucha por detener la transmisión madre-hijo del VIH durante el embarazo, parto y lactancia.
Educa sobre qué es, cómo se transmite, cómo se previene y cómo se trata el VIH/Sida.
Promociona la realización y fácil acceso a pruebas voluntarias de VIH.
Asiste a personas viviendo con el VIH/SIDA a acceder a servicios médicos, psicológicos y sociales disponibles.