Agency, Access & AGYW: Empathetic Engagement in HIV Prevention and Research

"...what are the key contributing factors that perpetuate the HIV epidemic among this very diverse population group? More importantly, what can be done to effectively address these issues?"

Authors: Anhad Hundal and Devi Leena Bose, February 20 2023 - Gender inequities, gender-based violence, and social norms that promote early marriage place women in a vulnerable position within society and thereby exacerbate the impact of HIV on adolescent girls. The lack of access to family planning services and effective prevention interventions, compounded by discrimination and stigma, limits the ability of adolescent girls to protect themselves from HIV and STIs [sexually transmitted infections]. Further, limited agency and decision-making ability are key challenges that must be overcome to even address why access is an issue.

Many social and behaviour change interventions geared towards HIV prevention have targeted enhancing the knowledge of adolescent girls. However, are we able to reach them adequately in places and spaces where they live, work, and grow? Studies have shown that adolescent girls often prioritize their relationship goals over their health goals. Effective programming must not only educate adolescent girls about the consequences of engaging in so-called "risky behaviours" (such as unprotected sex or sharing needles), but also ensure they are able to make informed decisions about their lives. Recently, a 15-year-old girl in India's north-eastern state of Assam injected herself with her boyfriend's HIV-positive blood to prove her love for her partner. This story highlights the need for HIV prevention communication to align with the relationship goals of young girls and help them gain skills to balance relationships and sexual health successfully. Pathologizing their experiences and relationships and reducing their relationship-related behaviours to “at-risk behaviours” disengages them from learning or seeking help when they are faced with challenging situations such as unplanned pregnancy, sexual abuse, etc.

Here, it is critical to understand that adolescent needs are not homogenous. After decades of advocacy efforts, program designers acknowledge that "one shoe doesn't fit all" when it comes to creating effective youth-friendly programs. To re-orient our messaging as per AGYW [adolescent girls and young women] needs, there is a lot of learning and unlearning required in the way programmes are structured, starting with understanding their diverse needs, their perceptions of themselves and the world they live in.

Messaging and programming in HIV prevention continue to focus on abstinence from sex or delayed sexual debut, however, the truth is that young people have sex before they reach their age of consent [PDF]. Effective HIV prevention for AGYW must integrate life skills training along with HIV and RMNCAH [reproductive, maternal, newborn, child and adolescent health] education, noted Dr. Renu Golwalkar, senior director of Gender, Youth and Social Inclusion at EngenderHealth, when we spoke to her. This will help them develop the agency to implement their informed choices, through core life skills of negotiation, assertiveness, problem-solving and decision-making skills. Simultaneously these programs should focus on creating an enabling environment, which is key for AGYW to negotiate an HIV-free life and contraception usage without any fear of stigma or backlash.

This also has a negative impact on the uptake of prevention options. A common perception among many is that PrEP [pre-exposure prophylaxis], a daily pill that can prevent HIV, is for so-called 'at-risk' populations, which is hurting its uptake in countries with access to PrEP. Puja (name changed) a young girl from New Delhi living with HIV during a visit to the field shared how "As a kid, I would go with my parents to the clinic. But now, as an adult girl, I go on my own. I feel everyone wants to know how I got it. Of course, the first thing that comes to their mind is that I am immoral. Everyone from the security guard to the doctor asks questions or gives judgemental looks. Sometimes I feel I should get my forehead tattooed that I was born with HIV so that they are less judgemental."

Stories like Puja's highlight a continued reinforcement of harmful stereotypes which perpetuates a culture of blame and shame that disempowers AGYW from openly and willingly accessing prevention services. As Anabel Gomez, social and behavioural research strategist and technical expert noted in correspondence with us, these lived experiences must be apprehended across the continuum of product development by designing products that are not only acceptable but also desirable to AGYW. The only way to do this is to take a multidimensional approach so that we understand what drives behaviours in what contexts and what their decision-making process is like.

It is equally important to engage those who are a direct influence, such as partners, family, peers, and religious leaders. Enhancing efforts to reach men is especially key given the roles they play in AGYWs' relationships and decision-making as heads of households and in patriarchal societies in general. This can include [PDF] encouraging conversations about masculinity, sexuality, relationships and mental health amongst all genders and promoting programs that engage men in parallel to those that engage AGYW.

At the end of the day, just reaching adolescents is not enough. It is important that the messages we send out to these young, impressionable women are in line with their values and belief systems and encompass and actively engage the ecosystems of influence in which AGYW exist. This holistic view will allow for more impactful, and, most importantly, empathetic engagement with this group.

Image credit: Monk® Prayogshala®

Click here to read the blog as originally posted on the Monk® Prayogshala® website.

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