Family partnerships key to family-centered care model

Different points of views sought for programs

When two of Juliette Schlucter's children were diagnosed with cystic fibrosis at The Children's Hospital of Philadelphia in the early 1990s, she and her husband soon came to the conclusion that the way care was delivered needed to be changed.

"Immediately, my husband and I had a lot of thoughts about the experience. What it felt like to be given difficult news in a crowded hallway, what it meant to our family, what kind of support systems we needed and had difficulty identifying, and more than anything how to get our arms around information quickly so we could prepare our family for what was to come," says Schlucter.

What they did not realize at the time was that leadership at the health care facility also had recognized that changes needed to be made in the delivery of care.

Schlucter became one of the parents that partnered with health care professionals at the hospital to implement the concept of patient- and family-centered care.

In 1995, she was hired as a family consultant and worked in that position until 2004. Currently, she is consulting on a special project at The Children's Hospital of Philadelphia to advance family-centered care. This project is analyzing the needs of future families so they will feel supported and partnered with health care professionals. It is identifying best practices for family- centered care through individual surveys and making sure families have a consistent experience across the continuum of care.

Barb Precht began volunteering at Cincinnati (OH) Children's Hospital Medical Center when her son was diagnosed with juvenile rheumatoid arthritis at age 2. Although her son is now in college, she is serving a second term as a member of the family advisory council.

Precht says her son never thought he would be able to go away to college but is able to manage his chronic illness because the medical center at which he received care was family centered. When family-centered care began to be implemented, her son had the opportunity to be involved in his care and the decisions that were made even at a young age.

"With family-centered care, our children have a better understanding of their disease and how they can take control of it," explains Precht.

There are enormous benefits to patient- and family-centered care, agrees Schlucter. For example, if Schlucter told the physician there was a change in the way one of her children were breathing he or she would listen. The communication promotes trust, says Schlucter, and high-quality safe, effective care.

Different point of view

It is important to have the voice of patients and family members in the decision-making process because staff look at issues differently, says Precht.

For example, it was family members sitting on the family advisory council at Cincinnati Children's Hospital that brought up the need for valet parking. Parents who have children in wheelchairs or with other special needs can have difficulty getting from the parking garage to their destination especially in bad weather. They may have additional items to carry and other siblings to escort.

Precht, who worked on the sub-committee for this project, telephoned people at hospitals in various cities and states to find out how they operated a valet parking service. After the information was gathered, members of the committee worked with parking staff at Cincinnati Children's Hospital to write a proposal that included information about obtaining bids from outside companies to operate the service. The committee presented the plan to the board and it was approved.

Another important improvement that made the hospital more family friendly was the redesign of the surgical waiting room. A softer, more comfortable style of furniture was introduced and several reclining chairs were purchased so families waiting for a long period could recline for a while if they wished.

In addition, portions of the waiting room were partitioned off to provide privacy for families when the surgery was not going well. A playroom separated from the waiting area by glass also was added.

Before programs are implemented at Cincinnati Children's Hospital, input from members of the family advisory council, which consists of staff and family members, is sought. For example, when the pulmonary department wanted to make the entire medical center a nonsmoking facility the idea was presented to the advisory council.

One woman advocated for smokers stating that it would be difficult for family members to simply give up cigarettes when they were already under a great deal of stress. While the council agreed with the pulmonary department and the campus will be completely nonsmoking, the needs of family members were addressed and they will be able to receive help for their addiction. For example, they will be given nicotine gum. Staff members will take those who must smoke to a place off campus as well.

Diversity is what makes the council successful, says Precht. She is halfway through a second two-year term on the family advisory council at Cincinnati Children's Hospital. Although most serve only one term, Precht was asked to stay on to complete work on special projects in which she was involved.

To find council members, applications are taken and then each candidate, whether staff or family member, goes through an interview process. Two council members conduct each interview and then answers to the questions posed are discussed by the entire council.

Precht says potential council members who don't seem to see any flaws with the hospital aren't good candidates, but neither are those who are too negative. In addition, people who have received health care from a variety of departments are sought.

There is no formal orientation; council members simply receive a binder that has information on the hospital, the advisory council, and projects the council has completed and is working on.

"It also has information on what to look for as far as family-centered care, such as respect, information sharing, and support, so they always have that in the back of their mind," explains Precht.

To work in partnership, it isn't just patients and families that must understand the concept of family-centered care, but staff as well. Often staff members see it as another initiative such as patient safety, cultural competency, and literacy, says Schlucter.

She says the consulting project, Advancing Family-Centered Care, seeks to unify the message, helping all staff members understand family-centered care is the way a health care institution operates and is not just another initiative.

Sources

For more information on what partnerships are like with patients and families, contact:

  • Barb Precht, community development director, Arthritis Foundation, Ohio River Valley Chapter, 7124 Miami Ave., Cincinnati, OH 45243. Phone: (513) 271-4545, ext. 112. E-mail: bprecht@arthritis.org.
  • Juliette Schlucter, project consultant, advancing family-centered care, The Children's Hospital of Philadelphia. Phone: (610) 407-7030. E-mail: schlucter@emial.chop.edu.