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Patient and family advisory councils help usher in a culture of family-centered care
To make council effective, create a partnership between patients/families, staff
Family-centered care is becoming a familiar concept. It is defined by the Institute of Family Centered Care in Bethesda, MD, as: "an innovative approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care patients, families, and providers."
Many health care institutions working to create a partnership find that the establishment of a family and patient advisory council is a good start.
These councils help bring patient voices into the discussion of ways to improve the care experience, says Cezanne Garcia, MPH, senior program and resource specialist for the Institute of Family Centered Care.
"Hospitals have found that advisory councils bring tremendous insights and can be a responsive sounding board," she adds.
What is valuable about councils is that not only can department heads, special committees, and others bring issues, topics, tools, or programs to them for review, but also these entities can return if they continue to have questions, says Garcia. This differs from the use of focus groups, which are disbanded once they have given their input.
While creating a patient and family advisory council is one of the traditional steps to implementing family-centered care, the philosophy of partnership must exist within the organization for it to be effective.
"If that philosophy is not present and acted upon, a family advisory board is not sufficient. You will not have family-centered care because you have a family advisory board," says Michele Lloyd, senior vice president for patient care and family services at The Children's Hospital of Philadelphia.
However, one way this health care facility uses families as partners to guide its decision-making process is via a family advisory council.
What does an effective patient and family advisory council look like? First, the majority of its membership must be patients and family. The Institute of Family Centered Care advises two to three family members for every staff member.
With staff members seated alongside families on the advisory boards, many points of view are heard, and the education process takes place, says Lloyd. If only families were on the council, there would be no partnership.
It also is important to put in place a good selection process for patient and family members as well as staff.
Membership selection is critical, says Lora Harding Dundek, MPH, manager of birth and family education and perinatal support services and co-chair of the University of Minnesota Children's Hospital, Fairview, parent advisory board in Minneapolis.
"We are looking for patients and families that have a variety of experiences both positive and negative, but more importantly, those that can broaden their view to support all patients and families. They really have to be able to take a broad view," says Harding Dundek.
It is a big mistake to seat parents with lots of complaints on the board simply because staff is stymied on how to resolve their issues, she adds.
Criterion for selection is an active relationship with the hospital or clinic system, says Harding Dundek. Parents must have had a child hospitalized for at least five days or made three visits to the University of Minnesota Physicians clinic system.
Interested parties fill out an information sheet and then are contacted by Harding Dundek and a parent member of the advisory council.
The interview includes probing questions about the candidates' experience to determine if they can broaden their view to speak for all parents and children.
According to Garcia, it is good to have application forms with open-ended questions on all kinds of issues, such as ways the applicant would like to see care improved and the types of issues on which they would like to work. In this way, the selection committee can determine if the applicant is a one-issue person or can see the broader picture, says Garcia.
Sometimes, patients and family members are not emotionally ready to sit on an advisory council. These councils are not support groups, she adds.
Choose staff carefully
Although staff members are a smaller percentage of a patient and family advisory council, it is important to determine their selection process as well.
At Cincinnati (OH) Children's Hospital Medical Center, staff members apply for seats on the Family Advisory Council when terms expire in the same way family members do. Not only do they fill out application forms, but they also are interviewed by parents who sit on the advisory board. Yet these positions are in great demand, and more staff members apply than there are seats available, according to Joy Bennett, and Kay Fricke, parent coordinators and co-chairs of the Family Advisory Council.
In the past, the council looked for staff members who were simply knowledgeable about family-centered care. Now that family-centered care is more embedded in the organization, the council seeks staff members who are well-positioned and passionate about spreading family-centered care in areas where it is lacking.
The Children's Hospital of Philadelphia selects leaders from various areas such as nursing, the residency program, and the department of pediatrics to fill the eight staff positions on the advisory council.
"We select representatives from very large segments of our organization who can both take information back but also bring leadership decision making to the table," says Lloyd.
It's important to dialogue, engage, and exchange in educating one another, so in time the people from the hospital leadership team and the families have changed. It is always a rich and rewarding conversation when there is representation from both groups, says Lloyd.
Simply sitting at the table together engaging in conversation builds relationships and the partnership, says Garcia.
It's all about working together, adds Garcia, and collaboration means patients and family members learn about some of the opportunities as well as the realistic constraints within health care organizations.
Councils can be very effective. Input from the council is sought at The Children's Hospital of Philadelphia for all new building projects, whether a new radiology department or operating room. Also, it is involved in the designing of enhanced care coordination systems and with patient safety issues. Recently they helped with the design of the family-centered care pages on the web site to make them accessible and helpful.
At the University of Minnesota Children's Hospital, the council has assisted with the design of a new pediatric sedation service, the establishment of a new family lounge, and the design of a new children's hospital. It also provides input on processes and procedures. For example, members helped the children's units design an enhanced security system. Feedback is frequently provided to units on such issues as patient transfers and family presence at invasive procedures and resuscitation.
In 2009, the council's goal is to work more on parent-to-parent support. One idea to accomplish this goal is to hold a pizza night every few weeks where parents can connect with other parents who have children with similar diagnoses.
The council aligns its yearly goals with the medical system's strategic initiatives. One of the strategic initiatives for 2009 is patient satisfaction, explains Harding Dundek.
The purpose of the family advisory council at The Children's Hospital of Philadelphia is to provide advice, input, and recommendations to the senior leadership of the hospital. Family council members participate in the strategic planning sessions of the hospital as well.
"When councils are engaged in support of the work of the organization they have a much greater degree of success, satisfaction, and accomplishment," says Lloyd.
For this to happen, a senior-level staff member must sponsor the work of the council, taking part in meetings and providing information on any new work that is being initiated within the health care organization.
For more information about forming patient and family advisory councils, contact:
Joy Bennett or Kay Fricke, Parent Coordinator and Co-chair, Family Advisory Council, Cincinnati Children's Hospital Medical Center, 3333 Burnet Ave, ML 15004, Cincinnati, OH 45229-3039. Telephone: (513) 636.8182. E-mail: Joy.Bennett@cchmc.org or Kay.Fricke@cchmc.org.
Cezanne C. Garcia, MPH, Adjunct Faculty, School of Public Health, Senior Program and Resource Specialist, Institute for Family Centered Care, 7900 Wisconsin Avenue, Suite 405, Bethesda, MD 20814. cell phone: (206) 459-5516. e-mail: firstname.lastname@example.org. Web site: www.familycentercare.org.
Lora Harding Dundek, MPH, Manager, Birth and Family Education and Perinatal Support Services, MB449/University of Minnesota Medical Center and University of Minnesota Children's Hospital, Fairview, 2450 Riverside Avenue, Minneapolis, MN 55454. Telephone: (612) 672-4688. E-mail: LDUNDEK1@ Fairview.org.
Michele Lloyd, Senior Vice President for Patient Care and Family Services at The Children's Hospital of Philadelphia (PA). Telephone: (267) 426-6974. E-mail: LLOYD@email.chop.edu.