Family-centered care evolves as more and more collaboration occurs

As two perspectives come together, the quality of care improves

Institutions that are working to make the delivery of health care patient- and family-centered know it can't be done without full participation of the people they serve.

"The richness of having families involved in helping us improve our system is that they are not like us, they don't think like us and they understand things we don't," says Stephen Muething, associate director of clinical services in general and community pediatrics at Cincinnati (OH) Children's Hospital Medical Center.

The mindset at the health care facility had been that parents would be frightened if given all the medical information about their child or they would not understand. However, input from families has changed that philosophy and resulted in information sharing. Health care providers at Cincinnati Children's Hospital now believe when families are given information, better outcomes from the child usually result, says Muething.

The charts in the hospital are open to families and there is a place for parents who have children with complex conditions, such as a liver transplant or cystic fibrosis, to document their observations. Also, these families are given password-protected access to a secure portal with their child's medical records that they can access following discharge. If a child is rushed to an emergency department in a distant city, parents can log on to the system and provide the attending physician with all the child's reports and X-rays.

To implement family-centered care, there must be openness to changing the culture. It is changing the way people think and behave and that is complex and takes awhile, says Muething. "The simple idea is that families should be involved in everything about their care," he adds.

How families are incorporated into the system must in some degree be tailored to the individual medical center, says William Tietjen, (MSW) director of social work and family services at The Children's Hospital of Philadelphia.

While a patient and family advisory council has become one of the first steps in implementing family-centered care, most institutions don't limit involvement to one central committee.

For example, The Children's Hospital of Philadelphia recruited parents of children who received their health care at the facility as employees to act as family consultants. These consultants provide leadership for family-centered care, educate people on the core concepts, and provide services to families.

Their job duties include meeting with families during a coffee hour in the lounge area on a unit or at the learning center, as well as teaching first-year medical students about family-centered care. All are assigned to a clinical team in different areas of the hospital and may be asked to speak with a parent or caregiver about the decisions that lay ahead in the care of a child.

Increasing participation

At Cincinnati Children's Hospital Medical Center, in addition to a family advisory council for the entire organization, each unit and condition has an improvement team that includes family members. These teams focus on improving clinical outcomes and also outcomes in such categories as safety, satisfaction, and timeliness.

Taking what appears to be a great idea for quality improvement to families for input is not nearly as valuable as having the family as part of the team, says Muething.

In fact, family members help greatly in identifying areas that need improvement. For example, with family participation the team for cystic fibrosis came to the conclusion there needed to be improvement in the way families were first informed of the diagnosis.

Now, the physician meets briefly with the family to let them know the diagnosis and then volunteers work with them to get them through the emotional aspects of the news and help them understand what they are facing before the rest of the clinical team, such as the nurses and nutritionists, begin their work.

Muething says Cincinnati Children's Hospital does not look for family-centered care projects. Because the institution has family-centered care as a core value, improvements are made according to the concepts of family-centered care. These include dignity and respect, information sharing, participation, and collaboration, although some institutions have added more concepts.

Family-centered care is a continuous improvement process, says Tietjen. Recently, The Children's Hospital of Philadelphia formed a team for an initiative called Advancing Family-Centered Care. One issue this team will address is forming a database of families willing to be involved. Currently, 38 family members serve on the advisory council, but people from various departments are always looking for family participation and more people are needed.

"Families and staff are saying they want more participation and figuring out what that mechanism will look like in a sustainable fashion for years ahead is an important developmental challenge for any health care organization," says Tietjen.

He says it must be a mutually beneficial partnership. For example, it is difficult to find family members to work on a project that will require four month's time, with meetings scheduled the second Wednesday of each month from 1 p.m. to 3 p.m. However, if alternative methods of participation are tried, such as e-mail or a web-based system, it may be easier to find people who can participate, says Tietjen.

"It requires members of the staff to think about how to engage families and get out of the 'I want you to participate by my framework' attitude," he explains.

Wherever families are used it is important that health care providers remember they may not understand all the medical language used; it is important to provide background information and definitions so they can be better participants, says Tietjen.

In addition, sometimes staff members need to gain insight into the medical experience of families. At Cincinnati Children's Hospital family members suggested that staff walk in their shoes. Many staff members have gone through a medical experience with families, such as accompanying them during a visit to the emergency department. The experience can be eye opening.

"Someone in the emergency department may say they will be right back and mean it, but they don't come back for an hour. How does that make a family feel? Being in the room with the family and watching them go through that experience really changes your perspective," explains Muething.

Including families on committees, a task force, or process improvement team, is not difficult. Family members that can provide quality input are everywhere.

"At first we didn't know how to find them and then we realized it is the family I have been working with, it is the next family I am going to see. You realize they are everywhere. Finding families that are interested and want to help has not been an issue," says Muething.

Sources

For more information about the use of patient and family members in quality improvement initiatives that shape family-centered care, contact:

  • Stephen Muething, MD, associate director of clinical services in general and community pediatrics, Cincinnati Children's Hospital Medical Center, OH. Phone: (513) 636-0404. E-mail: Stephen.Muething@cchmc.org.
  • William Tietjen, (MSW) director of social work and family services, The Children's Hospital of Philadelphia, PA. Phone: (215) 590-2072. E-mail: TIETJEN@email.chop.edu.