Teaching Doctors About Families from a Parents Point of View - A Parent Becomes A Leader 

Karen Tate

Family Consultant

The Children’s Hospital of Philadelphia

Philadelphia, PA

As a family consultant, Karen Tate makes a huge difference at The Children’s Hospital of Philadelphia and in the lives of their patients and families. She didn’t plan on being employed at the hospital, but twelve years ago, her daughter Candace, then 8 years old, suffered a stroke. Karen stayed with her in the hospital. 

“I didn’t want to leave Candace there alone” she says. “They wouldn’t know that she was afraid of the dark, or what she liked. They would just leave the TV on, and if a commercial for a scary movie or something came on, I would get up and change it.” 

When Candace came home, things got even harder. “It was difficult trying to access different services or finding resources [for a child with new disabilities] once we were at home. It’s hard trying to find it on your own if you haven’t had experience with it,” Karen says. 

She gradually learned to navigate the system so well that a social worker from the hospital asked her to come and speak to a group of physical therapists, pediatricians, and other therapists and staff. This was new for her.  

“I’ve never been a person who likes public speaking,” she remembers, “but the social worker said it will be like a discussion, they’ll ask you questions. They really want to hear about your experiences. After I did that, it was a really good feeling. They seemed very concerned and really appreciative of having that opportunity to ask me questions and to find out from my perspective the reality of having a sick child.” 

Making a Difference

Right away, Karen was able to help physicians and staff appreciate the reality of having a child with special health care needs, particularly with managing care at home. “They were familiar with things they tell parents to do, but not realizing how difficult that is once you get home and you have other kids to take care of. What really made me feel good was to see that they were starting to make changes. When they gave out the home exercise sheets to the parents, they would tell them, ‘We realize that it may be difficult to do all of this, but if you could just focus on this one.’ That made me feel good, because I realized that I was able to make a difference.” 

Karen’s work was so valuable that she was asked to apply for one of the family consultant positions at the hospital and was hired. Most recently, she has been serving as the Director of Family Collaboration for a program called LEND (Leadership Education in Neurodevelopmental Disabilities). Each year LEND has trainees from different health fields who work with children like Candace. 

“I teach family-centered care classes,” Karen says. “One is a family mentorship program. The LEND trainees can go to the home to see what a typical day is like. They might go at dinner time or even go in the community, like to a restaurant or a soccer game or something. Just to see what their life is like outside the hospital.” 

Participating families receive an honorarium for opening their homes to the trainees. The professionals respect the families as teachers. But LEND is only twenty percent of Karen’s work as a family consultant. She describes her job this way. “I meet with parents at the bedside to provide family-to-family support. I support staff around issues of family-centered care. They’ll e-mail me or page me or call when they have questions.” 

Karen’s work has changed her life as much as that of the people she serves. “It’s great,” she says. “I really enjoy it. It doesn’t feel like a job. It’s more like this is what I was meant to do. The hospital really values having parents as paid professionals, working as part of the team.”

To read more about Karen’s leadership experience, visit her profile at the Institute for Family-Centered Care.