Gatekeepers and gift baskets: Recruiting vulnerable populations Julie Barroso, PhD, ANP, RN, FAAN Professor and Dept. Chair barroso@musc.edu

Women with HIV infection Very hard to reach population, especially in the Deep South, where the confluence of cultural values and history make those with HIV feel particularly stigmatized All of my recruiting for studies has been community based

There’s always the usual stuff... If you need vulnerable women to come someplace to participate in your study, you need to provide: Bus passes/parking passes Remuneration for their time and travel Child care Something to eat and drink

You must become known in the community as a good person who is doing research to help others If people think you are just doing research to climb higher in the ivory tower, you will not be able to recruit participants for your studies It also helps if you are involved in the community in other ways

You must know your population first – Where do they get care You must know your population first – Where do they get care? Are there social services agencies that serve them? Where do they socialize? Then go to those places and meet people Wear your street clothes, and bring copies of your best articles Go to the clinics, food banks, AIDS service organizations

Get there about 30 minutes earlier and offer to simply wait Then sit there and OBSERVE... Who is the real gatekeeper? In most clinics it is NOT the providers It is usually those people working at the front desk So those are the people you must convince to hand out your flyers/make them available

Once you are ushered back to the titular gatekeeper, keep it brief: Explain what you will be studying What you need them to do for you Be clear about what you do NOT need Thank them profusely

Be sure to thank the people at the front desk on the way out and tell them you will come back in a couple of weeks to see if they need more flyers Then go back, with some nice treat for the front desk people: Bath and Body Works gift bags, cookies, etc. Yes, I know you can’t charge these to a grant

The gatekeepers will often help you out in remarkable ways Letting people use their phones to call you about your study Calling you themselves to tell you about someone who is homeless, who would be a perfect person for your study, and you can use one of their exam rooms to gather data

BUT...the most important things you can do Be nice to your participants Do everything you can to maintain confidentiality Be organized, on time, fully present, with their remuneration Explain how you will follow up with them Discuss what you will do with your results All of this will encourage them to go back to the clinics and tell the staff about your study and that participating in it was a good thing to do

Places other than clinics Go visit them yourself; don’t send your research assistant Take supplies to post flyers: push pins, page protectors, etc. Your flyers may need to go on a bulletin board, in a notebook, etc.; be prepared for several scenarios

When you have your data analyzed... Go back to each of your recruitment sites (those that referred participants to you) and present the findings Ask about doing it early and bring breakfast, or at lunchtime and bring lunch Yes, I know you can’t pay for this with your grant money But this means so much to the people who got you your participants

We also notify the women that we recruited from a site when we will be presenting the data there, and invite them to come I am always amazed at how emotional everyone becomes when they see the data It means a lot to them that we would come back We treat everyone with loving kindness

I have personally met every research participant I have ever had, to thank them for helping out People talk, and how you have treated them will become known in that community, especially if it is a vulnerable group It makes future recruitment so much easier

Final thoughts Never burn bridges Be nice to people You will need these folks over and over again, as you start new studies and need participants Keep trying!