Worksheet Helps Professionals See Patients as People First

May 20, 2014
By Rachel Kremen

Sam Curran has limited communication but can still help doctors, bus drivers, teachers and care givers learn more about him by handing over his This Is Me tool: a specially designed worksheet with his personal, medical and educational information.
A patient should always be seen as more than a cluster of symptoms. For patients with special healthcare needs, a holistic view is even more critical. That’s why the Thompson Center for Autism and Neurodevelopmental Disorders at the University of Missouri provides a worksheet called the “This Is Me” tool, which was specially designed to help caregivers get to know patients personally and medically. The tool was developed by parents of children with special health needs, in partnership with medical professionals, as part of collaborative projects that empower families to improve healthcare.

“Often times it’s the parents who come up with the best ideas,” says Christy Blakely, a NICHQ parent partner who was integral to the development of the “This Is Me” tool. “Families of children with special health needs see the medical system from a unique perspective, and can spot systemic problems that might go unseen by professionals.”

Early incarnations of the This Is Me worksheet were inspired by such a problem. It was first raised at a NICHQ collaborative project on epilepsy approximately eight years ago by parent Elizabeth Aquino, when she shared a story about a visit to a Los Angeles teaching hospital. A doctor brought a group of students to see Aquino’s daughter, motioned to the girl and said, “This is the disaster that can happen with uncontrolled epilepsy.” Aquino was appalled.

“He called her a disaster in front of her, in front of me, and in front of six young people in training,” she says. “All the doctor could see was a diagnosis. He did not see a child and loving mother, or consider how his behavior might influence the way the students view those with disabilities.”

After Aquino shared her experience at the epilepsy collaborative, several other parents–including Blakely– shared similar stories. Aquino felt that if the doctors could get to know these children and their interests they would likely be more engaged with them, and more communicative about potential drug side effects. Aquino wanted the doctors to understand that there was a person behind the diagnosis, a person who might prefer to play, read, or paint, than spend much of their time groggy from medication.

Working together, the members of the collaborative created a template for a one-page document they called the “All About Me” page. The intention was to provide caregivers with a snapshot into the life of the patient, along with some medical information. Blakely has a sheet for her adult daughter, Lauren. It includes photos of Lauren carrying the Olympic torch and getting married, as well as lists of medical procedures and supplies. Blakely says the personal info helps staff connect with patients like her daughter, who cannot easily communicate.

“The nurses were at a loss with how to be with her and talk to her,” she says. But they’d mention the picture of Lauren with the Olympic torch, and Lauren would perk right up.

Tool Refinement

The “This Is Me” worksheet (DOC) can be easily adapted to suit any special needs child, and used in a variety of settings, including schools and hospitals.
Krista Hughes, clinical services manager at the Thompson Center, saw the document through the Collaborative to Improve Care for Children with Autism Spectrum Disorder in 2012, and was impressed. The members of that collaborative decided to refine the idea further, using a silent brainstorming approach. Everyone in the collaborative was given sticky notes. Each member wrote down things they thought should be included on the worksheet–one idea per sticky note.

“Then we took all those Post-Its, broke up in groups, stuck the Post-Its up on a wall, and silently arranged them based on which ones went together,” Hughes says. In this way, they created an affinity diagram of Post-Its, with names for each category. It’s a process they use a lot at the Thompson Center, Hughes says, because it’s much faster than traditional brainstorming.

A nursing student at the Thompson Center created a new, two-page layout for the worksheet (see right), which was renamed the “This Is Me” tool. The first page has labeled boxes for personal information, including life goals, preferred activities, and preventative behavior supports. There’s also a spot in the middle for a photo. The second page focuses on medical and school info.

“I love it because it works across care settings,” says Alicia Curran, mother of Sam, a 13-year-old boy on the autism spectrum. Curran is also the Autism Speaks Autism Treatment Network site coordinator for the Thompson Center. “Due to limited communication skills, Sam can’t explain for himself. This tool serves as his voice, allowing him to effectively communicate vital information.”

Sam uses the tool with new doctors, school bus drivers, and teachers. As Sam gets older, Curran thinks the document will also help her be more comfortable with the idea of him going to appointments without her.