Communication; A Painful Challenge

Most parents of children who are non-verbal or verbally delayed will agree that one of the most frustrating things is not knowing.  Not knowing what they are thinking, if they are hurting or the location of the pain, or what they want or need, is nothing short of heartbreaking for a parent.  The first one puzzled me for years.  I wanted, just for five minutes, to get into his brain so I could understand his thoughts.  Jon's elementary school teachers, six years later, often recalled my husband's first words to them during his kindergarten, transitional IEP meeting.  They asked what we wanted most for Jon, and my husband's voice broke as he quietly responded, "I just want to be able to communicate with him."  Those words spoke volumes and revealed six years of heartbreaking pain that only a parent with the same wishes can understand.  Pain comes in many forms, but for a nonverbal or cognitively impaired child, physical pain can be difficult to decipher and treat.



Our first peek inside Jon's mind came one day about seven years ago.  My husband and I had worked tirelessly remodeling our bathroom.  My husband had cut, routed and molded pieces of wood and lumber into a masterpiece.  I had stained, varnished and added finishing touches.  The bathroom was absolutely beautiful; our hard work finally complete!  I came home from work one night, about three weeks later, ran to the potty with my legs crossed (nurses do not go to the potty at work, in case anyone wonders--another post/another time).   As I relaxed on my throne, I look around my beautiful bathroom and begin feeling the stress of another ten hour shift drain out of me--literally and emotionally.  Suddenly, to my horror, I spot something on our new wall that doesn't belong!!  It is black, it is big and it is UGLY.  I am furious!  It is quickly obvious WHO did it since the letters are crooked and I can't make out what it is or what it says.  To be safe, and a good parent, I call BOTH kids in and question them.  First, my daughter, a gifted, artsy, people-pleaser (that was before she became a teenager!) immediately denied any knowledge of the writing on the wall.  My suspicion was confirmed.  At this time, Jon was very limited in his expressive language.  He was coming around, but we still had to really pull things from him.  As we asked him about the wall, he took his little finger and placed it on each letter as he explained to us.

"R-O-N-G," he said.  Ahhhh, suddenly the letters were decipherable, but the meaning was still unclear.  Then his voice became stern and loud.  "WRONG <pause> Jon write on wall!  No, No, Jon-Jon!" at same time,  he gently spanked himself on the butt ("If I do it first, they will not." right?).  Inside, I died....laughing.  He had taken black paint, dipped his finger in it, put fingerprints on the wall and then realized he was in trouble, so went a step further to reprimand himself in writing...on the wall.  The same day, I notice on the outside of the bathroom door, he had written the disclaimer that is shown at the beginning of all Disney movies..you know, the FBI warning.  Humor was beginning to fade.  I can not accurately express the relief I felt on this day.  Not because I finally got that peek inside his brilliant mind, but because I knew that the day was coming when he could express his needs, and most of all, if he hurt, he could tell me when and where.





As nurses, we must always remain vigilant in our efforts to control patient pain.  Pain control is never more challenging than with a nonverbal patient.  As a pediatric nurse, the majority of pain assessment often becomes objective, because of the patient's inability to verbally describe pain, however, as we know, pain is always subjective.  Pain and pain intervention is difficult to accurately assess even when our patients are verbal and have the cognitive ability to relay the area of pain, the duration of pain, the intensity of pain, and the degree of pain.  When the patient is nonverbal, or lacks the cognitive ability to describe pain, then as practitioners, we must rely on nonverbal cues, and nonverbal pain scales.  However, are these nonverbal pain scales always accurate?  Do they always give us an accurate tool by which to reassess our interventions to pain?  The Face, Legs, Activity, Cry, and Consolability (FLACC) scale is most often used to assess pain in cognitively impaired children.  By comparing practitioner's FLACC assessments to subjective assessments of children with typical cognitive abilities, researchers have determined that FLACC is an accurate tool to use with children with impaired cognitive abilities (Malviya, Voepel-Lewis, Burke, Merkel, & Tait, 2006.  Another, and perhaps often overlooked and most accurate tool, is the parent.  I have always advocated that no one knows a child like their parent; no amount of education or experience trumps a parent's ability to read and decipher the needs of their own child.  Listen to your patient's parents!  A study comparing pain scale ratings for cognitively impaired children to the ability of a parent to accurately assess and decipher their child's pain validated my belief
(Soloduik, 2013).  Have you ever stopped to wonder how these pain scales are studied and developed?  That is right, with parental involvement.  So, while using pain scales to assess our fifth vital sign is not only okay, but encouraged, be careful to not neglect what may be our most valuable asset in pain assessment of cognitively impaired and nonverbal patients; the child's parent.








No comments:

Post a Comment