What we do matters
By Michael A. Rapoff, PhD
What we do matters . I recently wrote a commentary on adherence for a special issue of the Journal of Pediatric Psychology (Rapoff, 2013). The title of the paper was “Adherence Matters” and my main point was that by enhancing adherence to pediatric medical regimens we are likely to improve the health and quality of life for youth with chronic health conditions (Graves, Roberts, Rapoff, & Boyer, 2010). It is not particularly interesting to me that we can improve adherence. Pediatric psychologists are very knowledgeable about how to change behavior. The point of adherence interventions is to make positive changes in the lives of young people and their families. That's what really matters.
There are certainly other areas where we matter as pediatric psychologists. We certainly know how to reduce chronic pain and pain-related disability and how to improve the quality of life for youth with chronic pain (Palermo, Eccleston, Lewandowski, Williams, & Morley, 2010). We are also having a significant impact as members of interdisciplinary care teams for premature infants who are critically ill (and their families) in neonatal intensive care units (NICU). At the recent APA Annual Convention in Hawai'i, I attended one of our division symposiums, “Psychologists in the NICU: Current Issues and Challenges.” The chair, Pamela Geller, and other speakers, Stephen Gillaspy, Stephen Lassen, Chavis Patterson and Carrie Piazza-Waggoner, gave an excellent overview of the role of pediatric psychologists in the NICU. They documented the type of stresses faced by parents (heightened levels of anxiety and depression), screening instruments they are helping to validate to identify which family members are in greatest distress and need psychological support, and presenting models that integrate psychosocial care with prenatal and postnatal care of infants and their families.
The symposium was particularly meaningful for me because when I was attending, my grandson was still in the NICU. Harrison Andrew Rapoff was born on July 20, 2013, at 7:33 p.m. in Tulsa, Okla. In spite of weighing in at 7 lbs and being 19 inches in length, he was six days shy of 37 weeks gestation age (considered full-term by some obstetricians, as I am told). However, his lungs were not quite developed enough and he had pulmonary hypertension. He was admitted to the NICU and was ventilated and sedated for six days and stayed there a total of 21 days. Early on, one of the neonatologists told us that even though Harrison was the biggest baby in the NICU, he was the most critically ill. He did start to rally but my wife Kim and I told the neonatologists that we would not be going to Hawai'i if they could not assure us that Harrison was turning the corner. Fortunately, he did turn the corner and was discharged home several days after we arrived in Hawai'i. Kim, our daughter-in-law Lori, our son Nathan, our daughter Lindsey, and I are grateful to the doctors, nurses and respiratory therapists at St. John Medical Center NICU in Tulsa who gave excellent care to our grandson.
So, what was the NICU experience like? In a couple of words — extremely stressful. Even for an intact and supportive family such as ours (if I do say so myself), those first six days were torture, for we could not hold Harrison and initially could only watch him on a TV monitor. I ached not just for myself but for our daughter-in-law, our son, my wife and our daughter. It was like a double impact; experiencing my own stress but being stressed out for the rest of my family. It was a real relief when Harrison was off the ventilator and sedation and we could finally hold our little “Sonny” (the nickname that has stuck). The happy ending is that he is now thriving at nearly six weeks of life as of this writing.
I now have a greater appreciation for what my pediatric psychology colleagues are doing to help families in the NICU. Most of these families experience much longer stays than we did, their babies are more critically ill and they do not have our family's psychosocial resources. Many of them will need the type of psychosocial care pediatric psychologists know how to provide. We need to “toot our own horns” a bit more to let our medical, nursing and allied health colleagues know that what we do matters. As always, the best to all of you and please do not hesitate to contact me. Since this is my last message, I wanted to thank all of you for the privilege of serving as your president this year. Starting Jan. 1, 2014, the division will be in the capable hands of our new President Tim Wysocki.
Graves, M.M., Roberts, M.C., Rapoff, M.A., & Boyer, A. (2010). The efficacy of adherence interventions for chronically ill children: A meta-analytic review. Journal of Pediatric Psychology, 35 , 368-382.
Palermo, T.M., Eccleston, C., Lewandowski, A.S., Williams, A.C., & Morley, S. (2010).Randomized controlled trials of psychological therapies for management of chronic pain in children and adolescents: An updated meta-analytic review. Pain,148 , 387-397.
Rapoff, M.A. (2013). Commentary: Adherence matters. Journal of Pediatric Psychology, 38 , 688-691 .