At the top of your summer reading list? How about, Parameters for Evaluation and Treatment of Patients with Cleft Lip/Palate and Other Craniofacial Anomalies. Although the 34-page booklet may not be on your bedside table, the long, difficult title is misleading: The main characters happen to be your and your family!
Combined, the words family and families appear more than 60 times in the Parameters booklet. You didn’t know that someone had written a book about you? Well, it’s with good reason! Patients and families lead the way for successful treatment planning and outcomes. In fact, among the basic principles that Parameters stands on is that:
The team should actively solicit family participation and collaboration in treatment planning. When the child is mature enough to do so, he or she should participate in treatment decisions. (Parameters, p. 8).
There are many great reasons that patients and families become active members of the treatment team. Dianne M. Altuna, a cleft-specializing speech pathologist, educator, and researcher in Dallas reminds us of perhaps the most important reason, “The parent knows their child the best.” Cleft-care professionals know a lot about clefts and other craniofacial issues. Parents know a lot about the child. When professionals and parents bring all that knowledge to the table, we’ve got the foundation for the best outcomes for care.
Dianne shares an example, “When trying to decide upon an imaging study for a younger child (Nasopharyngoscopy or Videoflourography), I always review the two studies with the parents. I ask them which study they think would be easier on their child.”
Another significant advantage to the parent-professionals team model is that professionals manage the long-term big picture while parents focus on what’s next. Why? Treatment planning for cleft and craniofacial care is often a complex, interwoven schedule of interventions spanning many years. It can change and evolve along with the child as he or she matures. The team manages that dynamic, long-term treatment plan freeing the parent to focus on the many immediate care details and needs.
About the best parent-professional relationships, we often hear parents say things like, “If I have to think about the next 15 years, I get overwhelmed–but I can handle the next six months!” or, “Our team knows what he’ll need when he starts school but I don’t have to worry about that now, I can take care of what he needs in the meantime.”