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End stigma against children living with HIV

Bridging Caregiver-Child Bonds: Defeating HIV Stigma and Fostering Self-Esteem for a Child Living with HIV

In the small village of Otucho, Dakabela Parish in Soroti District, Eastern Uganda, lives Angel (pseudonym), a young girl (17 years) enrolled in the USAID OVC North East Activity. Angel faced a challenging journey marked by poor parental support and the burden of being the only HIV-positive child in her household.

However, concerted efforts bridged the way to a remarkable transformation in her household,

revealing the critical role of relationships and the fight against stigma in the lives of children and caregivers living with HIV.

Struggling in Silence

Angel lives with both her HIV-positive parents. Despite timely dispensation of drugs and clinical HIV care services from both clinical and community actors, she struggled with a non-suppressed viral load for months. As the only HIV-positive child among her siblings, Angel often questioned why she needed constant medication when she didn’t feel sick. On October 27, 2022, her viral load shot up to 118,000 copies/ml. Frustrated and fatigued by the relentless medication, she stopped taking her drugs consistently. What hurt her even more was the absence of parental support. In her own words, “…I expected my Mum to be on my side but she just shouts at me whenever I fail to fulfil the household chores, and my dad does not spare time for me…”. This isolation made Angel’s life even more challenging.

The OVC program team, recognizing her persistent non-suppression, embarked on uncovering the root cause. They discovered that a strained relationship between Angel and her caregiver played a significant role. Additionally, she experienced drug fatigue and discontinued her medication for two months (July-August). Angel’s HIV status was disclosed to her at the age of 14, at a time when her curiosity about her unique condition as an adolescent was at its peak. Further challenges arose from the fact that she was in boarding school, making it difficult for the facility and OVC program to consistently provide Intensive Adherence Counseling (IAC).

The Power of Collaboration and Support

Through the joint efforts of the Activity and the facility teams, Angel completed her IAC sessions at the facility and both Angel and her caregiver received community IAC.  Angel’s parents rekindled their love and care for their daughter, fostering a healthier relationship. Together with the Facility OVC Focal person, they provided ART care education, addressed post-disclosure trauma, and highlighted the disadvantages of over-representation of adolescents by caregivers during IAC sessions, which had previously hindered Angel’s interactions with fellow peers (Young Adolescent Peers (YAPs)). The parents were advised to establish a positive relationship with Angel, providing psychosocial support to motivate her to adhere to treatment diligently.

The Activity also facilitated crucial linkages for Angel. She received four boxes of temporary food support from Haba Na Haba, providing her with essential nutrition. She was linked to the TASO Center of Excellence for YAPS and even had the opportunity to represent children living with HIV on the Day of the African Child.

Agnes Tumuheire

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