Collaborative, family-centered approach results in better care

Caregiver must be active part of the entire health care process

A letter from a mother who was upset by the treatment she had received while her baby was in the neonatal intensive care unit at Vanderbilt Children’s Hospital in Nashville, TN, triggered a change in the way the hospital provides health care.

After beginning a dialogue, hospital administrators realized that parents were very important members of the health care team. As a result, a family advisory council was created that consisted of families that had experience with the hospital to make health care delivery more family-centered.

"We were startled to realize that these people were experts in our systems, and they could tell you what worked well in the business office and what didn’t work well, and what worked well in the parking garage and what didn’t work well. It was not easy to hear what these people had to say," says Terrell Smith, MSN, an administrative director at Vanderbilt Children’s Hospital.

The hospital implemented several suggestions from the family advisory council. One was the creation of a booklet for parents who had to admit their children to the hospital following a doctor’s visit. This booklet explains what to pack and what to leave at home. It also has maps to the hospital and information on parking as well as recommended references for preparing children for the hospital experience. The booklet is distributed to local pediatrician offices.

"They actually wrote the book. The parents told us what they needed to know if they were sitting in the doctor’s office," says Smith.

The council also initiated the creation of a hospital directory similar to those found in hotel rooms that familiarize guests with all the services available. Some of the information parents wanted to be included in the directory was a list of all the local churches within three miles of the hospital and a sheet that explained the initials for the degrees on all the health care professionals’ nametags such as RN and MSN. In this way, they would know who was coming into the room, explains Smith.

According to the Institute for Family-Centered Care in Bethesda, MD, family-centered care is "an approach to the planning, delivery, and evaluation of health care that is governed by mutually beneficial partnerships between health care providers, patients, and families." During health care delivery, patients and family members are part of the team. It is characterized by a "collaborative approach to caregiving and decision-making. Each party respects the knowledge, skills, and experience the other brings to the health care encounter."

Part of the decision-making process

Physicians and other health care providers need to listen to their patients, says Smith. A mother who has a nonverbal child with chronic ear infections often can diagnose the problem before the physician’s exam just by the way the child cries.

It’s important to get across to the medical team that parents and other caregivers should be included. "Make them part of the decision process, the planning process and the entire health care process because they are the ones that are taking the child home. They become the caregivers," says Smith.

When caregivers are incorporated into the process of care they become competent and confident and better able to take care of a patient when he or she is discharged, says Rosalie Parrish, MEd, program specialist for family partnerships at the Institute for Family-Centered Care. For example, when parents have the opportunity to participate in the care of their baby in an intensive care unit, helping with such tasks as feeding and diaper changes, they are better equipped to care for a fragile child upon discharge. They also learn to successfully operate the kinds of medical equipment that their infant might need after being brought home.

Education should be woven into the whole care experience, says Parrish. This would include sharing information with caregivers or patients through bedside conversation, including them in medical rounds, encouraging and supporting patient/family participation on hospital committees, providing a means for patients and families to give feedback about the care they are receiving and the priorities and concerns of their family, or simply providing families with educational materials. For example, parents of premature babies might receive a packet of information on the care required for a premature baby as well as the resources and services available within the community.

Growing in popularity

The concept of family-centered care is becoming more widely supported, says Parrish. The Institute for Family-Centered Care tracks organizations that support the concept.

The Oakbrook Terrace, IL-based Joint Commission on Accreditation of Healthcare Organizations launched its Speak Up program, which encourages patients and families to play an active role in the health care experience to ensure safety and quality of care.

In 2002, the National Association of Emergency Medical Technicians and the Maternal and Child Health Bureau of the U.S. Department of Health and Human Services published a position statement titled "Family-Centered Pre-Hospital Care: Partnering with Families to Improve Care." It recommends that emergency medical technicians use the family as a source of information and assistance in patient care and that they be given the option of being present during care, procedures, transport, and reports to other health care teams.

In 2001, the Des Plaines, IL-based Emergency Nurses Association published the position statement, "Family Presence at the Bedside During Invasive Procedures and Resuscitation." The position statement includes the following information:

"Several investigators documented the benefits of family presence during invasive procedures and cardiopulmonary resuscitation, which include knowing that everything possible was being done for their loved one; reducing anxiety and fear; feeling of being supportive and helpful to the patient and the staff; sharing critical information about the patient and the patient’s condition; maintaining the patient-family relationship; closure on a life shared together; and facilitating the grieving process in the emergency department and later at home."

As part of its "Protocols for Practice" series titled "Creating a Healing Environment" the American Association of Critical-Care Nurses (AACN) in Aliso Viejo, CA, published guidelines on family visitation and partnership in the critical care unit. The AACN recommends that families be prepared for the experience of critical care and on how to support their loved one. Also, they state that the attitudes and beliefs of nurses on the unit must be changed so that they will know how to work with families.

The Dallas-based American Heart Association recommended in its guidelines for cardiopulmonary resuscitation and emergency cardiovascular care published in 2000 that health care providers give family members the opportunity to be present during resuscitation. However, the organization noted that such a policy takes advance planning and the commitment to work through initial problems.

Can be a slow process

Making patients and family members an integral part of the health care team begins with an assessment to determine what is already in place at an institution and what resources are available, says Parrish. Change can begin with something as simple as positive signage that makes it easier for families to find their way around the health care facility or having educational materials in multiple languages easily accessible.

Other changes require more effort. For example, a change in hospital visiting policy might involve a change in design such as providing beds in patient rooms so that parents can spend the night with an ill child.

To make Vanderbilt Children’s Hospital a family-centered facility, physicians, patients, and families were asked two questions: "What does it look like when care is going well?" and "What does it look like when care is not going well?"

The hospital administrators then analyzed the data and came up with a list of values that was given the acronym, FOCUS. This acronym stands for: F — family-centered care; O — one team; C — continuous improvement; U — unique environment for children; S — service excellence.

Hospital policies and processes were revamped to reflect these new values. For example, visiting policies were changed so that parents could spend more time with their children and come and go. Construction of a new hospital will be completed in December and the critical care unit will have beds for the parents to sleep near their children.

Families and committees

To create an environment for family-centered care at the new facility, family members were part of the planning committees and interacted with the architects just like any other committee member, says Smith. In addition, the architects took the plans to the family advisory council to ask if the space was family-friendly.

Family members are included in all areas of Vanderbilt Children’s Hospital. The chair of the family advisory council sits on the leadership council with all the department heads and also was on the interview team for the new CEO last year, says Smith.

However, to incorporate patients and families so completely in a health care system does require a change in culture through staff education. When Vanderbilt created its FOCUS values, everyone was schooled on them, including physicians and board members. "We have woven those principles into our orientation process," says Smith.

Yet, it is not enough to educate staff about family-centered care in one orientation session. "As far as the educational process, you need to find various ways to keep this message alive, and it is not all just classroom lecture. You have to weave this into the culture of the organization," says Smith.

Highlight examples in the in-house newsletter or print appreciative letters from parents that reinforce family-centered care, she suggests.

Once the hospital invited a columnist and her young daughter who had written a book titled "Olivia’s Rules for Doctors" to do a medical grand rounds which is usually reserved for the latest research or clinical issues. The child wrote the book after spending 65 days in the hospital. "We are trying to do education for physicians that is tailored to what families have to say," says Smith.

(Editor’s note: Next month, learn how Dana-Farber Cancer Institute in Boston uses patient and family advisory councils to create a culture of family-centered care. This piece will cover how to set one up, select council members, and operate a family advisory council.)


For more information about family-centered care, contact:

  • Rosalie Parrish, MEd, Program Specialist for Family Partnerships, or Beverley H. Johnson, President/CEO, Institute for Family-Centered Care, 7900 Wisconsin Ave., Suite 405, Bethesda, MD 20814. Telephone: (301) 652-0281. Web site:
  • Terrell Smith, MSN, Administrative Director, Vanderbilt Children’s Hospital, Nashville, TN. Telephone: (615) 322-0111. E-mail: