How to Make Youth and Families Count in Health Research

The involvement of young people and families in health research is crucial. Their personal experiences and insights are invaluable. When research aligns with what patients need and want, it becomes more meaningful and effective. However, there are hurdles to overcome. Sometimes, youth and families are only included for show, without real influence. Power dynamics can be tricky, with researchers holding more control. There are also questions about why engagement happens and how accessible it is for everyone. Training for both patients and researchers is often lacking, and tools for fair engagement are scarce. To tackle these issues, various models and frameworks have been created. But, these solutions often don't fit well when it comes to involving youth and families specifically. There is a gap that needs to be filled. One major problem is tokenism. This is when youth and families are included in research just to check a box, not because their input is genuinely valued. It's like inviting someone to a party but not letting them dance. This can lead to frustration and mistrust. Power imbalances are another big issue. Researchers often hold more power in the process. This can make it hard for youth and families to have a real say. It's like trying to play a game where the rules are always changing and you don't get to make any of them. There are also concerns about the motives behind engagement. Sometimes, it's not clear why youth and families are being included. Is it to make the research better, or just to look good? This can make people wary of getting involved. Accessibility is another challenge. Not everyone has the same opportunities to get involved. Some people might need more support to participate, like training or tools that are easy to understand. Without this, engagement can feel out of reach. Training is a big part of the problem. Both patients and researchers need to learn how to work together effectively. But often, this training isn't available or isn't tailored to the needs of youth and families. It's like trying to build a house without any instructions or tools. There are also few tools designed for fair engagement. This means it can be hard to create a level playing field where everyone's voice is heard equally. It's like trying to play a game where some players have better equipment than others. To make things better, we need to create new frameworks that fit the unique needs of youth and families. This means looking at what's already out there and figuring out what works and what doesn't. It's a big task, but it's worth it to make research more inclusive and effective.