General
05.12.2012

Website developed in Centrinho USP helps children with cleft lip

Purpose of the platform is to provide online access to information for parents of children with cleft lip and palate

The Hospital for Rehabilitation of Craniofacial Anomalies (HRAC / Centrinho) USP, Bauru, assessed on a site geared search for information on cleft lip or cleft palate, an opening in the region of the lips caused by poor training during pregnancy. In the research, a preview of the content was presented to 100 parents or guardians of patients who passed by HRAC and 87% of them gave a generally positive review for the vehicle, pointing it as very good or excellent.

The need arose when the site psychologist Marina Bigeli Rafacho, author of the dissertation The internet as a resource to access information for parents of children with cleft lip and palate, realized that the internet harbored much information on the subject, but content and disconnected often with a scientific approach, which hampered the understanding of readers. That's when the idea arose from the site.

A lot of scattered information ends up confusing parents. Sometimes they see a very complex case and find that your child has the same problem, but each case has its specificity, says Marina. The new site covers the different types of cleft, to make it easier for the reader to identify the type of anomaly that demand. We put the popular and technical name of each crack. We try to leave everything in the simplest way, then go to developing content, according to each specific situation.

Parents or guardians were given two questionnaires. A map for basic information such as age, education and region where he lived. The other contained questions about the structure of the site, such as comfort in searching for information, clarity and understanding and objectivity. All these points were sorted by most parents as excellent or very good. The topics that attracted the most attention were concepts, types and causes of cleft lip and palate, followed by issues related to inclusion in school and rehabilitation and care.

The Centrinho is well known for the treatment of cleft lip and palate and craniofacial anomalies and provides a reference for people with disabilities, family members, professionals working in the area and other interested parties. Many are from other regions of the country, then we believe that the site will help a lot in maintaining our contact with these patients, explains the psychologist.

<b> psychological Monitoring </ b>

Besides the basic information and tips that help in day-to-day life of children, the site aims to initiate a communication relationship with your readers. We see from the Regional Board and Federal Psychology a way to offer a means of contact for these people. This would happen through the provision of an email, that would be under the control of the staff of the Section of Psychology HRAC, the researcher suggests.

The researchers, teachers and students of the section would act helping to resolve the doubts of the people. Communication is very important. This is a vehicle for enlightenment, but also want parents to feel welcome and know they can find help, explains.

But the focus of the site is not only for patients and their caregivers, reaching also the professionals who work far from large centers. With this site, we aim to provide specialized information to professionals as well as disclose what new is happening in the area. Medicine is very dynamic and we have to follow. This requires a constant update of a vehicle to organize and centralize information.

A completed version of the site will be released soon by the team of HRAC / Centrinho and it will be connected to the site Fundação para o Estudo e Tratamento das Deformidades Crânio-Faciais (Funcraf). The researcher ensures that when the work is finished, the site will be widely publicized.

Source: USP