Parental perspectives on management and treatment of cleft l

[Sonia Werner]

Hi,


I am a final year Communication Pathology
Student (Speech, Language Therapy and Audiology) at
the University of Pretoria, South Africa. I am
currently conducting a research study regarding
parental perceptions of the treatment of their
children with a cleft lip and/or palate by a TEAM of
specialists? In other words do parents feel
that a team approach is better than individual
treatment?, does the large amount of professionals
that they have to communicate with bother them?
Are they satisfied with the treatment outcomes? How
are parents' needs addressed? What information do
parents want to know?


I would really like to hear what your opinions are
on multi-disciplinary treatment.


Many thanks, Sonia

[Karen]

I feel that the team approach is definitely better for our family, rather than use the local resources. I have to drive three hours away for the cleft team, but it is well worth it! Yes, the team can be overwhelming...in one day you can be told your daughter's hearing has worsened, the doctor wants to schedule surgery for next month, another cavity on a tooth, all the sounds your child is unable to do for her age, you child has a sydrome.....on and on....in one day! Very overwhelming for a few hours of appointments. Despite this, I definitely am satisified with the team because I feel experts that deal with clefts all the time are looking at my daughter. Hope this helps!!!

[thomas72@mindspring.com]

I think team treatment takes away much of the stress of finding individual speacialists to treat your child's needs. Evaluation by the team often eliminates problems as well as identifies them, which is essential. I have friends who had a child with an undiagnosed syndrome which included a cleft, and the struggle to find information and answers was heartbreaking util the found a team. You should really look at the role of the clinical coordinator, a cornerstone to the whole process in my humble opinion. I know ours is outstanding, very acessible in a way the surgeons are not.

[Tiffany]

my son has a submucous cleft palate. he is 4 and we just found out. we are seeing the doctors at the center for cranialfacial disorders of scottish rite in atlanta ga. i really like the team approach. the doctors there work really close together and with you. i have never been somewhere that cared so much about a patient. the first time we went to see the speech pathologist he himself came out to the waiting room to get us. anyway the team approach is good because that means you have that many more resources. more than 1 brain is good sometimes. one might know something that the other one doesn't. hope this will help.