Parents’ Voices Heard at Shriners Hospital

At age 8, Alex Matson was diagnosed with Legg-Calve-Perthes, or LCP disease, a condition where the hip bone breaks down and decays over time. His parents, Jim and Debbie, took Alex to a pediatric orthopedic specialist, but his condition worsened, ultimately resulting in Alex becoming home-bound and home-schooled. That’s when Alex’s doctor referred him to the Houston Shriners Hospital for Children to obtain specialized treatment for LCP.

Alex eventually underwent corrective hip surgery and physical therapy, and soon gained back his mobility. Today, at age 14, he walks without an assistive device, is off pain killers, and is an active eighth-grader.

Jim Matson was so grateful for the care provided to his son that he wanted to give back to Shriners Hospitals. He decided to join the hospital’s Parent Advisory Council, established two years ago. The PAC is a group of parents and hospital staff who meet monthly to influence policy and program decision making at the hospital.

"After joining PAC, my goal was to heighten the focus of family-centered care and to provide input from a parent’s perspective," said Matson.

As PAC chairman, Matson and his team of parents have improved upon a myriad of hospital policies and procedures including:

• Promoting acquisition of bedside laptop computers for patients.
• Getting dry erase boards displayed in patient rooms to better communicate staffing assignments and upcoming procedures.
• Creating awareness of the need for reminder cards and calls to be completed for patients with upcoming clinic appointments.
• Getting inpatient room assignments to better coincide with surgical dates, allowing an optimal recovery environment for the patients.
• Consulting with the education team to create both media centers and information packets about various diagnoses and procedures.
• Promoting construction of an accessible changing area for older patients.

Matson credits Shriners Hospital Administrator Steve Reiter with allowing the PAC to be open and creative with their solutions and problem-solving skills.

"We started the PAC as a way to operationalize what we meant by family-centered care," said Reiter. "This committee allows our parents to get involved in a meaningful manner, and in turn help us to render more customer-friendly service."

Jim Williams, director of child life, said the purpose of the PAC is to promote, facilitate and support the provision of family-centered care, and also ensure that the family perspective is considered at all levels of policy making.

"Up until PAC was established, we could only make assumptions about what patients and parents wanted," said Williams. "Now we have a formalized method of communication that allows both parents and the institution the ability to influence the quality of care the patients receive and to facilitate process improvement."

Additional members of the PAC include Shriners Hospital staff members, Director of Patient Care Cathy Moniaci and Care Coordinator Fausto Padilla, as well as ten parents whose children are patients. Parents who serve on this committee are encouraged to connect with other families at the hospital and provide feedback to the PAC on a regular basis.

"Sharing stories is a wonderful coping mechanism and instrument for broadening perspectives," said Williams.

PAC member roles are to:

• Participate in monthly PAC meetings with other family members, the hospital’s child life director, director of patient care and care coordination team member.
• Consult on various hospital teams (transition, education, and patient satisfaction) and share their perspectives as a family member.
• Help develop patient education materials and review documents the hospital is creating.
• Help create materials that evaluate family-centered practices at the hospital, such as a family satisfaction survey currently being developed.
• Provide feedback about the physical environment of the hospital, as well as philosophies and approaches of the system itself.
• Play an integral role in development of a care coordination program.

"Our future plans for the PAC include getting the committee involved in our strategic planning process to create partnerships with parents, employees, and physicians," said Reiter. "In addition, we want the PAC involved in our transition program to look at ways to help our patients transition into a more adult, independent lifestyle."

---

©2006 Texas Medical Center

---

E-Mail: tmcinfo@texmedctr.tmc.edu
URL: http://www.tmc.edu/tmcnews/03_15_02/page_10.html