The Challenges of Locating Parents of Preterm Infants

Karen Cheng, Ph.D., Estrellita Co-Principal Investigator, University of California, Irvine

In the best of circumstances, it requires a whole lot of patience to recruit parents of preterm infants (born at <32 weeks gestational age). The parents are stressed, sleep-deprived, and may be caring for other children at home. We try to catch the parents in the Neonatal Intensive Care Unit (NICU) when they are visiting their babies. If we cannot find them there, we try to reach them by phone after their babies have been discharged from the NICU. We call and leave messages. We call and call again. For parents with stable jobs and stable home environments and who have active cell phones, we do eventually reach, well, some of them.

To complicate matters, we have been finding that a number of life factors make it even more difficult to reach and recruit these parents. There is the possibility of post-partum depression, for example, in the case of the mom whose voicemail inbox has been full for over a month. Some parents may have unstable home environments, as in the case of parents who do not have their own phone number and must be contacted through family members and friends; they may or may not live with these family members or friends, making it very difficult to pin down when they might be available at that number. And still other parents simply can no longer be reached at the numbers they gave the hospital upon discharge: in one case, the parent’s phone number stopped accepting calls within a few days of discharge.

Our colleagues at the Early Developmental Assessment Center (EDAC) face these challenges every day. EDAC and other high-risk infant follow-up programs across the country face overall attrition rates between 10-25%; rates are estimated to be nearly 50% for people of lower socioeconomic status. One key problem is the inability to reach parents to remind them to come in for appointments.

It’s a problem that appears deceivingly simple: contacting parents to tell them about the study or to remind them of their babies’ EDAC appointments. Yet it is surprisingly challenging and in the case of the EDAC appointment, it may have adverse effects on the babies’ health and development. Dini Baker, R.N., CHOC EDAC manager and Estrellita clinical partner, jokes about how nice it would be to give every baby a GPS tracking device upon leaving the NICU. I wonder if it might make it easier to contact the parents if U.S. cell phone plans allowed incoming texts or phone calls to be free – or if incoming texts or phone calls from certain phone numbers were free. For the parents whom we are able to contact and enroll in the study, our hope is that recording and sharing their babies’ ODLs with EDAC nurse case managers will increase their communication with EDAC and their likelihood of attending EDAC appointments, even after the study is over.

We’re continuing to wrestle with and brainstorm solutions for this problem. If you have any suggestions, we would love to hear them!

Learn more about the Estrellita (formerly FitBaby) project.
Read more posts from the Estrellita (formerly FitBaby) team.

 
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Comments

[Scott Pollock]

It is indeed a challenge. Although we have to understand the trauma undergone by a parent having a preterm infant, it is also best to educate them ahead the implications of not being able to follow up their EDAC appointments. If they soon realize the drawbacks on not attending to these appointments, they would somehow be convinced to attend since after all, they would want the best for their babies.

[Charlotte]

How about a home visit model, partnering with some other entity they will see to do outreach/ID, or offering incentives for participation?

[Kelli Kelley]

Hand to Hold (www.handtohold.org) would be interested in working with you to improve outcomes. Might we be able to schedule a conference call? kelli@handtohold.org

[Karen Cheng]

Scott - You are right that it is very important to educate parents as much as possible. Our clinical partner, the Early Developmental Assessment Center (EDAC), visits parents in the NICU and explains the EDAC program when scheduling the follow-up visits. One challenge, though, is that the follow-up visit occurs about 6 months after discharge. In that time, parents may have lost their insurance, moved, changed phone numbers, and maybe just forgot about the appointment. One goal of our project is to try to maintain contact with parents during that 6-month window so they are more likely to understand what EDAC does and why it is important to come in for their appointment.

[Karen Cheng]

Charlotte - Thanks for your comment! We had similar thoughts to your suggestions when designing our study:

We are using a home visit model for our interviews. It is going all right, but it has still been difficult to schedule them (see my latest blog post that should be up any day now). I'm not sure how to use home visits for recruiting but am open to hearing any suggestions.

Our clinical partner, the Early Developmental Assessment Center, does outreach to the parents in the NICU. And it is through that connection that the parents are willing to talk to us researchers.

We offer incentives for participation - including financial compensation and 4 months of unlimited minutes and data plan. Unfortunately, this has not been enough to entice some parents to participate. I'd love to hear any suggestions on other incentives that have worked for you.

Best,
Karen