My Journey in embracing the Peer-to-Peer approach of the Disabled Youth Investigates study

Naume Tukasingular Adong

My name is Naume Tukasingular Adong , a youth researcher with a hearing impairment. I am attached to the Disability Research Group from the Unit’s Non-Communicable Diseases research theme. I embarked on a transformative journey using a peer-to-peer approach in our Disabled Youth Investigates research study, funded by Arts and Humanities Research Council/UKRI. This study aimed to investigate the inclusion of youth with disabilities in social participation and research. This experience not only expanded my horizons but also profoundly impacted my personal and professional life.

While applying to be part of the project, I was paired with a peer who had skills in sign language interpretation due to my hearing impairment. Although we were interviewed together, my peer was not allowed to interpret for me during the interviews, an independent sign language interpreter was provided instead. This was to assess my knowledge and capability without the support of my peer.

Our journey began with a five-day research training program which equipped us with qualitative and quantitative research skills. We were trained in coding and data analysis using programs such as NVivo. Additionally, we received training in Good Clinical Practice (GCP) and General Data Protection and Regulations (GDPR) guidelines to ensure we adhered to research ethics. This enabled us to understand the significance of respecting participants’ privacy and obtaining their informed consent.

Following the training, we were attached to different research projects, providing us with great mentorship opportunities. These experiences offered practical skills and insights for our main research project.

While in the field, we discovered that research participants with disabilities appreciated the peer-to-peer approach. They felt comfortable expressing themselves to researchers with disabilities, whom they identified with, sharing sensitive stories and challenges they faced. This connection significantly contributed to the success of our research project.

The peer to peer approach has had a profound impact on my personal and professional development as a researcher. It has boosted my confidence and self-esteem and enhanced my public speaking and knowledge-sharing abilities as I was able to present and share study findings at AFRiNEAD conference in Cape Town, South Africa. The peer-to-peer approach also improved my training skills; for example, I trained other peers with disabilities on how to interview individuals with different disabilities.
Generating new ideas with my peer and learning from each other was a rewarding experience that has helped me become more open-minded and a collaborative team player.

During the study, we met several challenges that required innovative solutions. For example, when obtaining consent from participants with visual impairments we would read the consent form aloud while the participant listened or followed the braille consent form to ensure they clearly understood. We also provided detailed explanations when clarification was needed.

Collaborating on data coding and analysis presented its own set of challenges. Every peer was eager to contribute their ideas, which sometimes led to disagreements if one’s idea was not considered. However, our supportive supervisor always intervened to guide us toward the best decisions. This fostered a collaborative and respectful environment for everyone.

Reflecting on my experience, I strongly advocate for the adoption of the peer-to-peer approach in future studies. This method not only makes persons with disabilities more comfortable participating in research but also gives them hope and courage to step out of their shells. While Persons with Disabilities can conduct research independently, teamwork is essential. “Peers should be given complementary responsibilities to maximize their contributions,” I advise.

My journey in the Disabled Youth Investigates research project exemplifies the power and potential of the peer to peer approach. This experience showcased how inclusive research methods can lead to personal growth, improved career prospects and a richer, more collaborative research process. By embracing and advocating for the peer to peer approach, I hope to pave the way for more inclusive and impactful research in the future.

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