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Read this report of inspiring stories from Phase One of the Be Our Voice project.

Bringing the Parents' Perspective to Quality Improvement

October 2011

Janet DesGeorges is a professional parent.

In the world of healthcare quality improvement, this role is increasingly recognized, valued and exercised. But in her latest learning collaborative with the National Initiative for Children’s Healthcare Quality (NICHQ), DesGeorges and other parents are expanding the role of parents in order to…well, improve improvement.

What Parents Want

The Improving Hearing Screening & Intervention Systems (IHSIS) learning collaborative is DesGeorges’s fourth project with NICHQ. But for the first time, she and the other parent representatives of the 14 participating teams are meeting outside of the official structure to brainstorm with each other about the best actions to propose to their respective teams.

There is no qualitative difference between what the professionals and the parents want, says DesGeorges. They all want the best care for infants who may have hearing loss.

But, says DesGeorges, “Parents bring connectivity. Parents care about where the rubber meets the road. We care if a checklist somewhere gets checked only if it helps a family.”

As an independent, quality improvement organization, NICHQ runs learning collaboratives on a variety of pediatric healthcare issues, such as newborn hearing screenings, autism, obesity and breastfeeding. A learning collaborative often draws on people and resources from different sectors of the community to improve care through small tests of change. In the case of IHSIS, Early Hearing Detection and Intervention (EHDI) community members, physicians, audiologists and parents are working to improve screening, diagnosis and intervention for newborns with potential hearing loss.

Parent Advocates

In their first parent call, each parent was asked to share their story. DesGeorges’s begins 20 years ago, with her daughter, Sara. Sara was not screened for hearing loss in the hospital, and, as the mother of two already, DesGeorges says it took her a while to see the signs that Sara was not hearing. Her first attempts to get support were not validated—her pediatrician thought she was overreacting. After Sara graduated from an early intervention program at the age of two, DesGeorges was asked to be a parent voice for the program. She is now the Executive Director of the Colorado chapter of Hands & Voices, an advocacy organization dedicated to helping families and their children who are deaf or hard of hearing. Thanks to the work of people like Janet, today 97% of infants are screened at birth for hearing loss.

Another parent’s story stirred the group to action in the context of the current learning collaborative. She was walking out of the hospital, literally at the door, holding her brand new infant in her arms, when a nurse mentioned that, by the way, her baby failed the newborn hearing screening.

As a result of this conversation, the parent participants are now asking the teams to create specific plans for when this information will be delivered to parents in the hospital.  These parents believe that there should be a more standard mechanism for communicating such important information, and they’re creating a test of change to see how this could be reliably implemented.

Making Changes, Finding Success

Inspired by more parent conversations, another team gathered data on whether the nurse explained the results of the hearing screening to parents, and whether they scheduled follow- up appointments for those infants who failed.

Similarly, Marbely Barahona, a parent from Louisiana, is seeking to understand how parents can help by reaching out to new parents of children with hearing loss in a timely manner. “We realize that it takes too long before they start receiving support from other parents,” said Barahona.

So the team has created a form that will come from the local chapter of Hands & Voices that asks the parents directly if they would like to be contacted by another parent. It’s simple to fill out, asking only their phone number and the best time to reach them. The form will be sent in English and in Spanish, and the parents will be contacted by somebody that speaks their language.

“Marbely has helped our team understand families’ needs and concerns as well as the barriers they face as consumers in the EHDI process,” said Jeanette Webb, a Louisiana state EHDI follow-up coordinator. “By sharing not only her own family’s story and journey, but perspectives from other parents, she has given us specific ideas on where and what we need to alter or add in our EHDI program to be family-focused at all stages. Moreover, just as valuable, she has taken an active role in actually implementing changes and improvements. “

Meghan Guinnee is the Project Director for IHSIS. She believes that the input of parents in this and all collaborative work is crucial.

“In this learning collaborative, parents have not only helped us better understand the needs of their children and families, they've taken on leadership roles, helping to plan the work done in their states, and, ultimately, the overall direction of the Collaborative,” said Guinnee. “Parents are a tremendous benefit to this project. Our ultimate goal is to improve the lives of children with hearing loss, and who better to help us understand how to do that than their parents?”

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