UNIQUE NEEDS: From left, Karen Darocha, RN, MGHfC staff nurse; Rosemond
Boateng-Boadu, MGHfC patient care associate; and Broder-Fingert discuss specialized care plans for patients with autism.
April is Autism Awareness Month, and at MassGeneral Hospital for Children (MGHfC), a team led by Sarabeth Broder-Fingert, MD, a second-year resident in Pediatrics, is working to improve the inpatient experience for patients with autism and their families.
Through the Quality and Safety Mini-Grant Program of MGHfC, Broder-Fingert received support to create a specialized hospital admission plan for patients with autism and their families. To carry out the project, she recruited a multidisciplinary team, including caregivers from the Lurie Family Center for Autism at MGH, other MGHfC physicians, occupational therapists, social workers and child life specialists, and parents.
After months of meetings and with the guidance of an advisory board, the team came up with a standardized document carefully designed to identify the special needs of each patient with autism, whether related to environment, feeding or communication. The document, which will be a part of the patient's electronic medical record, provides staff with the detailed information they need to ensure that the patient is as comfortable as possible. In addition, a summary of the information will be posted at each patient's bedside for easy access.
"Every patient with autism is unique, and likewise, his or her needs are unique," says Broder-Fingert. "Sometimes small things can make a really big difference, whether it be speaking softly or changing the lighting in the room.
These things can literally make or break a hospital admission for a patient
with autism, but they are not usually listed as part of a patient's official medical chart. We are trying to change that."
The team began incorporating the new documentation into patient medical records this month and expects the initiative to be fully implemented by August. Post-visit surveys of parents and providers are being conducted to gain feedback about the effectiveness of the initiative. So far, says Broder-Fingert, the feedback has been excellent.
Now that the team is helping better communicate the needs of patients with autism, it is purchasing specialized supplies to support staff in meeting those needs, including weighted vests and blankets, sensory toys, and communication software for creating storyboards and social stories. The supplies, which are being purchased with funds from the MGHfC grant, will
be kept in the Ellison 17 Playroom.
"At MGHfC, we have a strong tradition of family-centered care," says Broder-Fingert. "This initiative is a way for patients with autism and their families to have a voice in their care."