Young people’s participation in community-based responses to HIV – Interviewing a young researcher.

Beginning last year, Watipa (commissioned by UNAIDS and the PACT as part of its #uproot agenda) carried out a study to better understand and document community-led interventions that aim to strengthen demand creation and uptake of HIV and sexual and reproductive health services, with a focus on engaging young people as beneficiaries, partners and implementers. 

The full report highlights the role that young people have in demand creation, linkages to care and uptake of services for HIV and sexual and reproductive health and rights.

Lucy from Watipa had the chance to interview Allen Kyendikuwa, one of the key researchers in the study. Find out, in the text below, what Allen’s insights on the finding of the study are:

Q: Can you please share a bit more information about the objectives and results from the study, including some of the insights you received from the interviews?

The study aimed to assess young people’s participation in community HIV responses, specifically demand creation, linkages to care and uptake of HIV and sexual and reproductive health and rights services. It also aimed to document and showcase models of youth participation in community HIV responses.

Q: Can you tell us about some of the main results?

The results indicated that young people play an essential role in demand creation, linkages to care and uptake of services for HIV and sexual and reproductive health and rights. It enhances the overall response to HIV and benefits the young people themselves.

Young people play a critical part in enabling access to HIV treatment and retention in care. Young people are actively involved in peer psychosocial support, peer-to-peer consultations, policy engagement processes, peer mobilization around specific campaigns and projects, and peer-supported hospital and care access.

Young people, including young key populations and young people living with HIV, also play a key role in primary HIV prevention, early testing and diagnosis. Peer education, outreach and community engagement are all areas where young people are informing and influencing their peers.

Q: Did you learn anything that surprised you?

This research found that there is a perceived value in young people’s participation in all stages of programme and policy design, implementation, and monitoring and evaluation. Despite this, young people are often seen as being passive in the process and participating only as beneficiaries; their role as implementers was either overlooked or taken for granted.

Increased attention has been given to the need to disaggregate data to reflect the diversity of young people and the important role they play in gathering data to inform nuanced policies.

Participants in the peer interviews also encouraged donors to resource the time and involvement of young people so that they could be paid for their role in service delivery and not only be considered as volunteers. Concrete suggestions were given to donors to provide core funding to enable organizations run by and for young people to have some funding sustainability and support in setting up governance and organizational structures to facilitate a stronger and more long-term engagement in the local HIV response. 

Q: You have done a lot of work at the national level. Can you share a bit more how youth organizations and networks support young people’s health and rights?

They support in changing public perception that young people as seen as being the problem to being the solution. Importantly, they develop leadership potential and community engagement, support policy formulations that enable the involvement of young people, increase the peer to peer information sharing, improve access to services, and can drive consensus towards a common language that amplifies attention to issues relating to young people from international declarations at the national level. 

Q: What is your message to donors, policy makers and UN entities, on how they can support youth organizations and networks working on HIV?

It is important to enable opportunities for the participation of young people from a variety of backgrounds (including rural communities) in community-based responses. Project discussion fora, youth-friendly service access and policy engagement processes often are limited to major cities and can leave behind young people in rural or hard-to-reach areas.

Young people’s involvement in the HIV response is primarily siloed. The results from this study showed that young people’s involvement in community based response to HIV is both essential for the response to HIV as well as beneficial for the young people themselves.

Young people have proven to have great impact on the community responses and hence must be given a special package of criteria where young people compete freely within their capacities vs funding calls that have mega criteria requirements that are greater than their years of experience.  Conditions for working with young people must inclusively consider partnerships on top of recipient status.

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