Adolescent Friendly Reporting Systems

The Good Participatory Practise Guidelines for biomedical HIV prevention trials (GPP Guidelines, 2011) note the increasing pressure for researchers to provide research results to all participants. In assisting researchers to design reporting systems and disseminate research results, the guidelines set out an appropriate process that is based on needs of the research participants. Also in meeting the requirements of reporting the research findings, the Adolescent Participation in Research brief recommends that after the data collection and interpretation is complete, youth in research and researchers develop actions to address the problem, report back research findings to both young and adult stakeholders, and negotiate the political and logistical complexities of working for positive health outcomes. While reporting to young people is necessary, it should be noted that the implementation of the research findings is not easy and requires longer consultation with adult stakeholders and may in addition be funding dependent.

Discusses the importance of creating a research result reporting system that involves adolescents and young people
Highlights the requirements when sharing research findings with the adolescents
Explains why giving adolescents and young people an opportunity to share the information with their peers is necessary

Guiding researchers into engaging with young people about issues that may affect the availability of the medical product after the trials such as the licensing of production rights, additional marketing and distribution research. Involving the adolescents and young people in planning the dissemination of results and engaging with key stakeholders such as policy makers and grant makers. Finding a balance between the youth led process and taking accountability to key stakeholders like funders and policy makers.

Why reporting systems should be adolescent friendly

The GPP guidelines state that the benefits of structuring the process of giving feedback and reporting results to relevant stakeholders like adolescents, community members and funders has two fundamental goals:
- It ensures that the research goals that were identified at the beginning of the research project are achieved
- It strengthens the foundation for conducting future research with that targeted community
In addition, reporting the results to adolescents and adults is in line with the guiding principles of the GPP guidelines which are:
- Respect
- Mutual understanding
- Integrity
- Transparency
- Accountability
- Community stakeholder autonomy

Reporting systems are part of the communication plan

A research results reporting system should be part of the broader communication plan as the GPP guidelines expect ongoing communication between researchers, research staff and key stakeholders. Youth Community Advisory Boards (Youth CABs) and adolescents that are participants in the research need to be regularly informed about the developments and even challenges of the research.

Adolescents that are participating in clinical trials need constant key messages about the purpose of the trials, the risks, benefits and duration of the trials. At the end of the clinical trials, adolescents need tangible information about how they will receive ongoing support and treatment. It is important to ensure that Youth CABs and adolescent study participants are involved in the development of the results dissemination plan.

When sharing research and health intervention programme results it is prudent to focus on the positive outcomes.

Adolescents and young people that are involved in the research benefit from the positive outcomes of the research and are empowered to make better decisions in future research processes.

The Rural Health Information Hub confirms that positive research results may also interest those who seek to address similar issues in their settings and recommends that when sharing successes, we must highlight the following aspects:

Effectiveness of the programme / research intervention
Acceptability by the adolescents and the community
Sustainability beyond research phase

Platforms to use for reporting research results include:

Hosting health promotion events at schools / colleges
Inserting a summary of the research findings in organisation reports
Social media
Community meetings and youth gatherings

Other things to consider:

Results framework

The research results reporting system can be embedded in a Results Framework, which is made up of three elements:

Results diagram
Results measurement table
Monitoring and evaluation work plan

A results framework is a visual presentation of how the research process has developed from design phase, conducting research and analysis of results to a point of presenting the findings. A visual presentation of the results will be easy for adolescents and community members to understand the research process, its purpose and outcomes. The monitoring and evaluation phase of results dissemination is needed to ensure that research outcomes are implemented and clinical trial participants are linked to systems of health care in their communities.

Throughout research to results reporting, it is important to realise that there is a power imbalance between young people and the researchers and the following need to be considered when developing a reporting plan:

Who decides on the reporting tools and platforms?
Who funds this component of the research?
Who decides how research information will be used and shared?
What role will young people play during the results dissemination phase?
What information is communicated to young people (those that participated in research, Youth CABs and young people in the community)
To what extent is it possible to redress power imbalances?

Digital platforms to share adolescent focused health research

A report by UNICEF on MHealth and young people in South Africa identified the following digital platforms for sharing adolescent focused health research findings and adolescent focused health programmes:

B-Wise, NDoH https://bwisehealth.com/	It provides access to age-appropriate information on 10 thematic areas: SRHR, HIV, AIDS & TB, nutrition, fitness and physical activity, alcohol and substance abuse, mental health, gender-based violence, chronic diseases (physical and mental disability, violence, trauma and injuries and oral health.
BeingGirlSA, Proctor and Gamble https://www.youtube.com/channel/UCHmU6DmIfL_gX9arzNh3iOg	It serves as a space for girls to ask questions related to puberty, development and other issues of interest to them.
Choma Magzine, HIVSA https://choma.co.za/	CHOMA is an interactive mobile phone magazine targeting South African adolescent girls and young women aged 15-25 years, whether they are at school, unemployed or employed, or single, in a relationship, or married.
Crossroads Generation https://www .dw.com/en/top-stories/crossroads-generation/s-100776	Crossroads Generation, is an audio novella broadcast on radio in multiple languages throughout Africa by the deutsche Welle network. The purpose of the app is to provide young people with lessons on issues like drug abuse, teenage pregnancy and domestic abuse using an entertainment education approach.
Destiny Toll-free line for youth and students Toll free number: 0800 41 42 43 https://www.mediaupdate.co.za/publicity /84321/ndalo-media-joins-sadag-to-launch-the-destiny-helpline-for-youth-and-students	Provides counselling to high school pupils, university students and young out of school youth for treatment of trauma, depression, stress, anxiety and issues related to exams, career planning, racial and gender discrimination, social pressure or isolation.

BY YOLISWA NTSEPE (MA, PhD)
ADOLESCENT PROGRAMMES MANAGER

UPDATED NOV 22, 2023

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