when research carries a benefit

It can be great to recruit for research studies that may benefit their subjects, and I’m involved in several right now. I suspect that this is because “children are not just little adults” and many medical advances that have been proven in older people need to be re-tested in children to make sure that they are still beneficial and safe.

Many families of medically complex children are humbling in their altruism, and in their combination of trust in their medical caregivers (and by extension me) and advocacy for their children.  I often meet families who agree immediately to the study I’m asking them about– “anything to help”– and continue saying yes while I go through the minimum information they need to sign.  When you add a potential benefit to their child, talking about the study is easy and a great platform to make sure they understand the whole procedure.

The flip side of clinically beneficial research, though, is that your presence can be needed urgently.  It’s a privilege to talk to families when they are upset about an unexpected admission or procedure for their child and really just need to go get a cup of coffee.  Even though I can’t answer questions about whether a particular doctor is available or when a certain test will be ready, I hope it’s helpful that I’m not in a hurry (I’m just there to see them, and I’m going back to my office when we’re done), I have some general information about the hospital and the procedure, and my job is to approach them with the attitude that it’s OK to say no to me.  With some families, I can tell that that is comforting, at least for a little bit.

But, perhaps because the research relationship is what you make of it, it’s hard to feel satisfied in a job well done after these conversations.  I always come away feeling that, as much as I educated the family, I could have somehow super-educated them and solved their problem.  That’s impossible, of course: their child is sick.  The work to change that always feels painfully slow.  But I hope families can come away with the knowledge that, by agreeing to talk with me, they’ve done one more thing to help.

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