Setting Goals with Families Leads to Greater Success

April 18, 2014
By Rachel Kremen

Thompson Center
The Thompson Center for Autism team’s approach to setting goals with families with children that suffer from insomnia as part of the treatment plan has had huge success.

As any business book will tell you, getting team members on board with a project is best accomplished by integrating them in all aspects of the work—including the goal setting process. This principle is certainly true in healthcare.

Several teams in NICHQ’s Collaborative to Improve Care for Children with Autism Spectrum Disorder project have adopted a new model of care that prioritizes input from families in setting goals for treatment outcomes. The new method was initially tested with just one patient per treatment center team, in a strategy known as n=1. After the approach was refined, it was rolled out to five more families per center. Testing and tweaking continued, and slowly more families were enrolled. Ultimately, this carefully crafted, family-centric method resulted in improved symptoms for the patients involved.

“I think it’s always helpful just to try something with one patient before you try to implement it across the board,” says Lynn Cole, pediatric nurse practitioner at the University of Rochester Medical Center and a faculty advisor for the NICHQ project, whose efforts focused on reducing constipation in patients with autism. “By rolling out the program slowly and testing each change, the project team was able to use lessons learned from the first few families and apply it to those enrolled later.”

Kristin Sohl, MD, lead autism specialist and medical director at the Thompson Center for Autism, first used the goal-setting approach with a family with a child that suffered from insomnia, a common problem for those on the autism spectrum that can significantly impact quality of life. She discovered that asking the families about the targeted condition was crucial to setting appropriate goals.

“One family might have a child who falls asleep quickly but wakes up at 3 a.m. and stays awake for several hours. Their goal might be getting the child to sleep through the night,” explains Sohl. “Another family might want to set a goal regarding bedtime, for example, ensuring their child is asleep by 9 p.m. While both families are dealing with insomnia, their goals—and hence their treatments—would be different.”

A combination of involving families more proactively and the n=1 strategy is proving very valuable in enhancing care. At the University of Rochester, physicians and nurse practitioners provided basic education about the treatment for constipation at the clinic and a member of the care team—often a registered nurse or care coordinator—contacted the families at regular intervals to assess the situation, problem solve, and reinforce teaching. Additional information about the problem was gathered via these check-ins, which helped tweak each family’s treatment plan.

“It was key for us to initiate contact with the family. In many instances the family wouldn’t have contacted us,” says Cole. Without regular contact, families would not have had guidance on how to adjust their treatment plan and might have simply given up in frustration if the original plan was challenging to implement.

Like all aspects of the project, the check-in calls went through several iterations, each more refined. Sometimes more questions were added for each check-in call. Sometimes new educational materials were written and sent to families. Sometimes the frequency of check-in calls was changed. Ultimately, each team had an efficient system for working with the families.

“When we first started it I thought, ‘We can’t be calling every patient about constipation. We’ve got bigger fish to fry.’” But Cole says she realized it was manageable, once the task was assigned to one person and she had a tested and refined system for implementation.

The program also proved successful with patients. Cole says that all of the 26 patients enrolled found a successful method for treating their constipation, and more than 50 percent found relief within a month of starting the program. Similarly, all of Sohl’s patients met their sleep goals. Sohl’s first patient took eight months to graduate, but she says she learned a lot by working through a variety of issues with that family that she now applies to others. Though the project officially ended in February, Sohl says she continues to use the approach.