Partnering for patient-centered education: Consider the possibilities!

Start small, but aim big to include a patient perspective in all aspects

As health care organizations embrace the concept of patient- and family-centered care, patient education managers must start looking at ways to partner with patients and families in the planning, delivery, and evaluation of education.

There are two actions you can take, says Karen I. Wayman, PhD, director of family-centered care at Lucile Packard Children's Hospital at Stanford in Palo Alto, CA. One is to determine how to incorporate the philosophy of patient- and family-centered care into education. The other is to determine how to participate in the family-centered care initiative within the hospital.

Usually, health care institutions that are beginning to embrace patient- and family-centered care form an advisory council, and that is a good place for a patient education manager to begin, says Wayman.

Bring patient education initiatives to the advisory council, she advises. For example, the council might review a written piece for family — friendly language, or the council could be used to help develop an idea for a project. A patient or family-member could be placed on the committee working on the project, as well. It depends on how comfortable staff members are about sharing their thought processes with consumers. Sometimes, the partnership must begin with small steps.

The way this partnership develops depends on the institution at which you work. However, there are many ways to make patient education a partnership that reflects the family-centered care philosophy.

At Seattle (WA) Children's Hospital, guidelines for developing health education and policies pertaining to working with patients incorporate the institution's commitment to family-centered care, says Christoph Hanssmann, MPH, CHES, a health educator. For example, education guidelines discuss the use of a question-and-answer format and the use of the pronoun "you" when writing materials so the reader is engaged. As part of their standard, they always state that parents know their child best and as such are an important part of the care team.

Projects often are taken before the Family Advisory Council; however, getting feedback from this long-standing council is just one way that families are involved at Seattle Children's. More than 150 family consultants serve in many roles and regularly participate in quality improvement workshops as team members alongside staff, give feedback in focus groups, and formally review health education materials, says Devora Chavez, MA, MPH, CHES, a family-centered care coordinator at Seattle Children's.

Early on, the health care facility realized a diverse group of people would be needed for input; therefore, a family consultant program was developed in addition to the Family Advisory Council.

Many methods can be used to shape a patient- and family-centered care educational program or teaching sheet, says Megan Woltring, MS, a health educator at Seattle Children's Hospital.

In recognition that no one parent can represent the whole family experience, the hospital tries to use many methods for gathering diverse family input. One strategy is to interview families who are in the hospital about their experience. Also, there is a group of regular family reviewers who evaluate educational materials. One dimension rated is how well the educational piece "includes me as part of my child's care team."

While it's important to have people who understand the partnership role involved, such as those who serve as family consultants, input from all types of families that use the hospital services should be included in the planning, development, and evaluation process, says Carol Parry, MA, a family-centered care coordinator at Seattle Children's Hospital.

Evaluate the project, committee, program, or written piece and select a couple of parents who might have an ongoing involvement, and then solicit input from others — such as someone who has just come for a clinic appointment and never participated to — provide a fresh perspective, advises Parry.

"We try to keep in mind there is the convenient sample of people who have time to participate in long, ongoing work, and then there are people who come in through the ED for the first time — or those living across the state who have language barriers. We always try to keep all those people in mind when we are looking to involve families," adds Chavez.

Wayman says that at Lucile Packard Children's Hospital, it is understood that one parent on a committee does not speak for all parents. Therefore, committee members may request a focus group when they think more consumer input is needed.

How far should you go?

Bring patients and families into every aspect of program development, advises Cezanne Garcia, MPH, senior program and resource specialist for the Institute of Family Centered Care in Bethesda, MD. If forming a focus group, use those patients who sit at the table of an advisory board or patient education committee to help design the questions — and also to look at the data collected. It's often very difficult for health care providers to separate what they think patients need to know from what they are authentically saying they need to know, explains Garcia.

Another partnership to consider is in the actual education, says Garcia. In addition to having patients and family members help design and evaluate a program, have them help with the teaching. For example, in a community outreach forum on spinal cord injuries or chronic illness, a patient or caregiver could address the issue of hiring a caregiver.

At Lucile Packard Children's Hospital, some of the parent advisors partner with the health care providers to provide family-related discharge teaching, says Wayman.

For example, the health care provider will provide the information about medications the patient would need to take at home, and the family member would discuss such issues as what help might be needed or how to ask questions once discharged.

The organizational structure for family-centered care at Lucile Packard Children's Hospital has a three-tiered approach to parent involvement. First, parents are selected for the family advisory council. After working on the advisory council for a while, parents can be considered for work in a service line. For example, a parent of a child with a heart problem might be assigned to cardiology to help develop family-centered care programs within this service line.

A few parents move on to the third level, where they help lead programs, oversee the family advisory councils, take part in the parent mentor programs, and help publish materials. One of the lead parents at LPCH is co-chair of the Patient Education Committee and brings the family perspective when reviewing patient education materials.

"They all begin as part of the advisory council. We decide together whether it makes sense to progress, given what is going on with their child or with their skill set and interests. Not everyone is chosen. It is a paid position, and we have the recruitment process, screening process, and then the training. We treat them as employees," explains Wayman.

Involving patients and families in the continuous performance improvement process not only improves patient education but can make it more patient-and family-centered.

Recently, a parent was recruited at Seattle Children's Hospital to be part of a review of a serious event that looked at the process of teaching, says Parry. "The parent reported that she felt everyone around the table was equal and her participation was valued," she adds.

The philosophy of partnership is highly beneficial to patient education. It results in better teaching materials, says Wayman. With patient and family involvement in the development process, not only is the language clearer, but also the tasks the patient is to perform are more understandable, as well.

Ultimately, partnerships in patient education mean better outcomes for everyone, says Parry. "There will be better patient safety, because the information and education is something the parents understand and use. The quality of the child's care will be better, and it will be more cost-effective, because we won't produce materials and resources that are not helpful," she explains.

Woltring adds, "When we have that partnership, we recognize that families are a key part of the health care team. Then they are more likely to feel empowered to ask questions, to advocate for their child, and to feel engaged in the patient teaching."

Sources

For more information on shaping a family-centered care education, contact:

• 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: cgarcia@iffcc.org. Web site: www.familycenteredcare.org.

• Devora Chavez, MA, MPH, CHES, Family Centered Care Coordinator; Christoph Hanssmann, MPH, CHES, Health Educator; Carol Parry, MA, Family Centered Care Coordinator; Megan Woltring, MS, Health Educator Seattle Children's Hospital, Seattle, WA. E-mail: devora.chavez@seattlechildrens.org.

• Karen I. Wayman, PhD, LPCH Endowed Director of Family Centered Care, Lucile Packard Children's Hospital at Stanford, Child Development Specialist, Stanford University School of Medicine, Dept of Pediatrics, Division of Hepatology & Gastroenterology, 750 Welch Rd., Suite 116. Palo Alto, CA  94205. Telephone: (650) 498-6410.