Counseling, Hearing Screenings, and Child-Parent Bonding: Interview with David Luterman, DEd
David Luterman, DEd (left) with Douglas L. Beck, AuD
Douglas L. Beck, AuD, speaks with Dr. Luterman about pediatric counseling, counseling parents, thoughts on hearing screenings and transitioning parents from diagnosis to education, the bonding of the child and parent, audiometric technicians, and more.
Academy: Hi, David. Always good to catch up with you. Thanks for your time.
Luterman: Hi, Doug. Good to work with you, again.
Academy: Okay, thanks! David, I know you’ve had a 50-plus-year career and you’ve focused quite a bit on counseling moms/dads and significant others with respect to deafness and hearing loss in babies, infants, and children. Of course things have changed quite a lot since you started working with this population. What are some of the striking changes?
Luterman: Back in 1965, we were doing diagnostics to identify children with hearing loss—and of course the equipment was very different. There was no ABR, no ABR screeners, no OAEs, no OAE screeners, and there were no mandated universal newborn hearing screenings. In fact, most of the children I saw were being diagnosed at between 18 and 36 months. So then, once we got hearing aids on the children, our responsibility ended and we sent them off to residential and other schools that had support services for deaf or hearing impaired children. Of course, the programs were very limited and my role was very limited.
Academy: And so you were about five years out of your doctoral program at that time (1965) and I’m wondering what you recall about your observations with regard to the parents of the newly diagnosed child?
Luterman: Well, that’s the issue. I noticed that it was very clear that the parents hadn’t come to grips with their child’s deafness or hearing loss. It was a bit ironic, too, in that the professional community recognized and rallied behind the thought that hearing loss in children was extremely important, there was very little provided (or available) to address their needs.
Academy: And so that’s when you set up your program?
Luterman: Right. We set up the Family Center at Emerson College to help parents transition from the initial diagnosis, to entering the educational system. Again, at that time, the parents didn’t have a safe place or time to grieve over the loss of the “perfect child” they thought they were going to have. Further, there was nowhere to go to learn about the child’s educational needs and options.
Academy: And of course in 2012, there are many university clinics, speech and hearing centers, pediatric-focused clinics and hospital and private audiology practices that address these issues.
Luterman: Well there are many more now than there were in 1965, but there aren’t nearly enough. Even in 2012, across the United States, there are many towns, cities, and states in which there services are quite difficult to find and access. Of course, most cities and major population centers have options, but many rural areas have little or no options. And even though we do have more family centers, we don’t have enough that really focus on the parents.
Academy: And as we know, when the child is newly diagnosed with hearing loss, we actually need to focus on “treating the parent.”
Luterman: Absolutely. And here’s another major change from 1965 to 2012. When we diagnosed children at 18 to 24 months, the parents had a year or more to bond with, and establish a relationship with their child—prior to the diagnosis. Today, that’s not true. We can diagnose hearing loss and deafness almost at the moment of birth, which facilitates intervention before the bonding process—and that changed everything regarding the relationship between the parent and child. However, what hasn’t changed is that we’re still very much child-focused, and we generally don’t do an excellent job addressing the needs of the parents
Academy: A good point well taken. One could say the parents waited some nine months for their baby and they expected and desired (generally) a normal, happy, and healthy child, and then when the child is born with any abnormality—all those hopes and dreams are taken away in an instant. What are the most common, or perhaps primary, parental needs?
Luterman: Well, there are many. Parental needs at birth (and shortly thereafter) are to not be assaulted with news and a possible diagnosis about a disability. They need time to recover from the birth process and they need time to bond. Specifically, at birth and shortly thereafter, the parents and the child are at a highly vulnerable time, and I’m not sure we, as a profession, are sensitive to that. Parents are appreciative of the early diagnosis but grieve the fact that they never had a chance to enjoy the baby. I want to give the both. And to make matters worse, as a profession, we’re often not involved early enough with parents.
That is, many systems in 2012, leave the initial exposure and presentation of the bad news to the parents, to the hospital trained technicians—who may have some very limited technical training, but certainly we cannot expect hospital personnel to know anything substantive about the grieving process, or audiology, or amplification, or cochlear implants, or the educational processes and protocols related to educating deaf and hearing impaired children—and as you can imagine, it’s often the technician who is the first person to address the news to the parents.
Academy: That’s a bit frightening.
Luterman: And that leads me to the surprising conclusion (for many audiologists) that indeed, we’re now often diagnosing too early—as opposed to 1965, at which time it could be argued we often diagnosed too late.
Academy: And to clarify—is it diagnosing too early in 2012, or counseling/managing too late in 2012?
Luterman: Diagnosing too early. I think if we diagnosed at 3 to 4 months of age, we’d be fine. The child and parent would have the time they need and any language delay would be more or less, generally insignificant.
Academy: Based on the cochlear implant literature, I would have to agree…that is, fitting a child and starting excellent and comprehensive auditory rehabilitation at ages 12 to 18 months provides just about the same outcome as fitting the child between 6 and 12 months…but the issue is how would you get the parent to bring the child in for a diagnosis at that time? The beauty of newborn screenings is they occur while the child is already at the facility.
Luterman: Yes, well that’s an issue, but not one that’s insurmountable. If we worked with well-baby clinics and pediatric offices, I believe we could make it happen. Nobody’s really put very much effort into this protocol and so it’s hard to know what the outcome would be.
Academy: I agree. If we could guess at the results we wouldn’t need science!
Luterman: Right…and another thing is that if we first tested (or screened) babies at 3 to 4 months, we’d likely eliminate the vast quantity of false positives brought about via the current protocols. The last data I recall is that we have something like 3 out of 4 positive results are false positives.
Academy: Well, that’s a striking thought, and I have to admit, I recall you making the same point some 12 years ago when I was taking classes and working on my doctorate.
Luterman: Yes, it’s not a new point—but it’s an important one. Further, we lose about 50 percent of all the children identified as positives to follow-up. That is, the technician tells the mom or dad the child has failed the hearing screening and for half of them, that’s it. They don’t come back and maybe they go somewhere else, but maybe they don’t. So I believe we can do much better if we think this through a little more.
Academy: Yes, I understand. There is a high “lost-to-follow-up” rate. But how would we motivate and inspire the parents to bring the children in at 3 to 4 months? Particularly when the moms and dads are not very sophisticated observers or hearing loss behaviors and it’s their first child and they truly don’t know what to expect?
Luterman: Well, I think we would make it part of the screening protocol and we have to work with the pediatric follow-up protocols. I admit, not all parents will bring their babies back to the pediatrician for distance, financial or other reasons, but most do. So I think it’s worth a try, and it hasn’t really been tried, so it’s worth pursuing.
Academy: And walk me through your ideal process…how would that work?
Luterman: Well, the only thing I would really like to change is the time of testing and diagnosis, and again 3 to 4 months of age is likely ideal. I think it’s absolutely clear that the moms and dads need to bond with their baby, and that same time period also serves to naturally reduce the false positive test results by eliminating the transient conductive losses and then when we diagnose and intervene—the results and outcomes are much more likely to be positive and productive. In fact, if the mom has a strong sense of self-esteem, that’s the most predictive factor with regard to the child’s long-term success and that is why we have to look to the parents needs first. If we put the Mom at the center of our diagnostic and therapeutic thrust all sorts of good things happen for the baby. We can only go as fast as the parents can go.
Academy: Okay, well that certainly does make sense to me and I think the overall rationale is sound…but I’m still concerned about having a protocol that would get the child in for testing between 3 and 6 months.
Luterman: Sure. But we won’t know the answer unless we think it through, devise a protocol, put it to test and get it done.
Academy: Well, I have to agree. David, it’s always delightful to spend time with you. Thanks very much for your thoughts, insights, and concerns.
Luterman: My pleasure, Doug. Thanks for your interest in my work.
David Luterman, DEd, is a professor emeritus at Emerson College in Boston, MA.
Douglas L. Beck, AuD, Board Certified in Audiology, is the Web content editor for the American Academy of Audiology.