Stephanie Brown, RN, MEd
Cincinnati Children's Hospital Medical Center
Because children with special health care needs (CSHCN) require the use of more services and are treated by more physicians, therapists, and other service providers than children generally, their families need to have a means to organize the medical records and reports they receive when their child is evaluated by these specialists. They need a means to communicate and partner with their child’s service providers to help improve the care their child receives. Families of CSHCN who receive care at Cincinnati Children’s Hospital Medical Center do not all have access to a health care notebook to use to keep track of important paperwork and record pertinent information, improve coordination of care, and improve communication and interactions with their child’s service providers.
The purpose of this pilot project is to develop an educational intervention that can be provided to families of CSHCN who receive care at Cincinnati Children’s Hospital Medical Center which will enable them to use the Patient/Family Care Notebook more effectively as a tool to improve the health care of their child with special health care needs. This pilot study was conducted to evaluate the Patient/Family Care Notebook and the educational intervention to teach families about the use of this notebook to obtain input from user families to strengthen and improve both the notebook and the intervention in order to prepare for the larger study that will be implemented beginning June 2008.
Members of the Cerebral Palsy Clinic, the Spina Bifida Clinic, and the Transition Clinic and the Parent Coordinator of the Division of Developmental and Behavioral Pediatrics developed a prototype notebook, entitled the Patient/Family Care Notebook, for families who have CSHCN. After completing the notebook, the team recognized the need to train parents to use the Patient/Family Care Notebook effectively and designed an educational class/intervention to enable families to network with one other and support each other while simultaneously giving them an opportunity to begin the notebook.
On March 17, 2008 fourteen families who have children with Spina Bifida ages newborn to five years of age attended a two hour educational intervention to learn how to use the Patient/Family Care Notebook. At the conclusion of the intervention, families completed an evaluation of the class itself that consisted of 12 open-ended, yes/no questions as well an evaluation of the notebook itself that consisted to 10 open-ended, yes/no questions.
The families who attended the pilot educational intervention session commented that the notebook was “excellent,” “very good,” and “great.” They reported that the notebook was “very comprehensive,” organized in a usable manner, “flexible” and easy to adapt in order to meet the personal needs of their child and family. They reported the notebook will be most helpful to “keep track of medical records,” and “write down questions and concerns.” Families suggested that the notebook contain additional blank tabs, additional “log” forms, and be available in a PDF format so that additional copies could be obtained.
The families who attended the educational intervention session reported that the class was long enough to review the contents of the notebook. The participants reported that clear instructions were provided during the class. There was not enough time at the educational intervention session to enable families to actually assemble the notebook. Six of the families reported they preferred to put together the notebook at home and did not believe there needed to be additional sessions to enable families to assemble the notebook. The other six families reported the need for additional sessions to assemble the notebook.
The results of this pilot study were used to finalize the design of the larger study of the Patient/Family Care Notebook. A twelve-month study will be implemented beginning June 2008 in order to evaluate the educational sessions and the Patient/Family Care Notebook with 100 families whose children receive care in the divisions of Developmental and Behavioral Pediatrics and Physical Medicine and Rehabilitation.
