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!