Encouraging Disclosure to Increase Self-Esteem among Adolescents and Youth Living With HIV

Delphina Ntangeki

Improvement Advisor, KM and Communications, Tanzania, USAID ASSIST Project/URC

(Staff at PASADA main office take a quality improvement leadership course to improve the quality of care the clinic provides to people living with HIV. Photo credit: Delphina Ntangeki, URC.)

Today, October 11th, we celebrate International Day of the Girl Child. This blog post highlights the incredible strength of one young woman, who was born with HIV, and her efforts to overcome stigma and support others living with HIV.

In Dar es Salaam,Tanzania, the USAID ASSIST Project, Ministry of Health, Community Development, Gender, Elderly and Children (MOHCDGEC) and HIV/AIDS Implementing Partners (IPs) organized a 2nd National Pediatric ART Learning Platform. The three-day learning platform that took place from November 8th to 10th, 2016 brought together about 340 participants including health and non-health professionals from all regions of Tanzania. Participants included officials from MOHCDGEC, USAID (Tanzania), guests from Lesotho, USG HIV/AIDS IPs, MOHCDGEC staff from all levels, community leaders, patients, and representatives of children and youth. The objective was to share experiences and best practices in ensuring that children and youth get quality ART care. The learning platform was led by the theme ‘Pediatric ART Quality Improvement: Where are we; what has been done; and future prospects.’

More than 25 presentations were made during the learning platform, and several HIV clients shared their stories as people living with HIV. Sifa, a 19-year-old girl, was one of these clients.

Sifa recalled the times she and her late mother paid frequent visits to a hospital at the Pastoral Activities and Services for People with AIDS Dar es Salaam Archdiocese (PASADA). She was too young to know the reasons behind the visits, but her small ears remained open to the topics and discussions conducted at PASADA. She noticed the repeated topics about HIV and AIDS discussed every time they visited PASADA, and remembered the big billboards with HIV/AIDS advertisements she used to see in the Dar es Salaam city streets where she and her mother stayed.

“The billboards had harsh messages about HIV/AIDS. They had pictures showing graves and other bad things about HIV. I started asking myself questions on why my mother and I were going to PASADA and why every time we visited the main topics and discussions were about HIV/AIDS,” Sifa narrated.

It is from this curiosity, one day in 2004 she decided to ask her mother if she had HIV. “My mother replied that I was born with HIV. My mother was good to me. She kept encouraging me, and took good care of me.”

***

When Sifa’s mother passed away in 2009, she started living with her father and her stepmother. Hoping that her life would remain the same as the time her mother was still alive, Sifa decided to share the news of her HIV status with her stepmother. But things didn’t go the way she expected.

“My stepmother didn’t take the news positive. She set aside my plate, spoon and cup and told me not to use other things so that I would not infect HIV to other family members. If I would touch other plates or cups she would throw them away. She went as far as spreading words to other people in the street where we stayed that I had HIV.”

Stigma is still a big challenge among children living with HIV.

This put Sifa in a difficult situation. She didn’t want to stay at home because people stigmatized and pointed fingers at her. She started leaving home at 5am in the morning for school and came back at 9pm. She thought that reporting the matter to PASADA would help, but actually it worsened the situation despite PASADA educating her stepmother how to live and take care of Sifa.

“I stopped attending clinic and hated myself. In 2012, I became very sick. I went to my mother’s sister who took me to PASADA. I was initiated on ARV as my CD4 count dropped to 156… I accepted to use ARV knowing that I am the one to make up my life. I started to take good care of myself until my health improved.”

After she recovered, Sifa decided to go back to her father’s house. She had built confidence in herself and accepted who she was following education sessions she received at the PASADA HIV clinic. She completed form four in 2012. Although her final exams results were not good, she didn’t lose hope knowing that God had good plans for her. With support from her father, she is now doing her Diploma in Accounts.

“I am stronger now and I understand myself. I know my contribution in the community. I am no longer troubled with people talking bad things or pointing fingers at me because I know my status and they don’t know theirs. I have accepted my condition and now I am working to achieve my dreams.”

***

Sifa is now a peer mentor as she received peer mentoring training from PASADA. She is also a facilitator for one of PASADA’s programs. Her message to parents and caregivers who live with children who are HIV positive is to take good care of their children. “Don’t see that you are wasting time and money on them. If you take good care of me, you and the community will benefit from me. Don’t stigmatize us. If we are empowered, we can,” she said.

(At PASADA, staff learn quality improvement approaches and skills. Photo credit: Delphina Ntangeki, URC.)

Sifa represents more children facing same challenges as hers. Stigma is still a big challenge among children living with HIV. It slows efforts to HIV prevention as people are afraid to take HIV tests, use ARVs, and disclose their HIV status. Some children drop out of school because they can’t bear the pains of being stigmatized and pointed fingers.

Encouraging parent or self-exposure among children living with HIV/AIDS may increase their self-esteem and thus increase HIV service uptake. Sifa is proud that knowing her HIV status at young age (7 years) has helped to strengthen her physically and emotionally despite the challenges she went through. Now as a youth, she could stand up for herself and talk to other people about HIV/AIDS.

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