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Worldview 2008: A global nursing perspective

Therapeutic relationships:
Caring for caregivers, empowering families

by James E. Mattson

Elizabeth Steinmiller, Karen Anderson, Donna McKlindon.

Ever since The Children’s Hospital of Philadelphia (CHOP) opened its doors in 1855, the institution has regarded quality patient care as its primary mission, its raison d’être. The first U.S. hospital devoted exclusively to caring for children, CHOP boasts numerous innovations during its 153-year history: development of the whooping cough vaccine (1936), closed incubators for newborns (1938), vaccines for influenza and mumps (1940), the first neonatal intensive care unit in the United States (1962), development of the balloon catheter (1965) and the nation’s first pediatric intensive care unit (1967).

More recently, researchers at the hospital have developed a vaccine for rotavirus, pioneered new therapies to treat neuroblastomas, and opened the world’s first center to collect and analyze DNA profiles to better understand the genetic causes of childhood diseases. For four consecutive years, Child Magazine has ranked The Children’s Hospital of Philadelphia the best pediatric hospital in the United States, and for five years running, U.S. News & World Report has ranked it the best U.S. hospital for children.

Less known to the public, and part of the health care equation that many institutions fail to consider adequately, is the commitment by the hospital’s administrators to care for those who provide care—nurses as well as other caregivers. To address that need, they are drawing upon the expertise of three clinical nurse specialists in mental health—Karen Anderson, MSN, APRN-BC; Donna McKlindon, RN, MSN; and Elizabeth Steinmiller, MSN, APRN-BC. By focusing on mental health of the caregivers, these advanced practice nurses, with varied backgrounds in pediatrics, psychiatry and management, ultimately impact the health—both physical and mental—of patients and their families.

Jane H. Barnsteiner

Credit for the program’s inception goes in large measure to Jane Barnsteiner, RN, PhD, FAAN, who, in addition to her role as professor of pediatric nursing-clinician educator at the University of Pennsylvania School of Nursing, served as director of nursing practice and research at The Children’s Hospital of Philadelphia until 2004. Barnsteiner not only recognized the need for a program that would empower nurses, patients and families, she also helped ensure its success by advocating for its across-the-board implementation.

“We can’t talk about the history of caring for the caregiver at CHOP without paying tribute to Jane Barnsteiner,” says Steinmiller. “She was the guiding force. She really pushed to have us involved in programs across the hospital and, to gain a multidisciplinary perspective, championed our involvement in things outside of nursing.” Barnsteiner’s vision lives on and continues to be supported by nursing leadership and hospital administration.  

The history
As is true of many pediatric hospitals, patient care at The Children’s Hospital of Philadelphia has become “family-centered” in recent decades. At CHOP, family-centered care is defined as “a system-wide approach to pediatric care based on the assumption that the family is the child’s primary source of strength and support.” Change begets change, of course, and as the traditional delivery of care shifted, the new complexities of family-centered care made navigating relationships difficult, for families and staff members alike.

Nurses at the hospital began discussing the problem in earnest in the mid-1980s. One of those nurses was Donna McKlindon.

“One of the issues was preferential treatment,” says McKlindon. “What we saw in the context of care here at the hospital was that families sometimes preferred a specific nurse, or a nurse preferred to care for a specific patient. While we support consistency of care and planning ahead, it doesn’t mean that the plan always revolves around one person. Situations developed that were overly exclusive. Even when multiple caregivers were obviously necessary, other nurses were sometimes prevented from participating in a patient’s care.”

“Lack of clarity with regard to boundaries inadvertently set up conflicts among staff members,” McKlindon continues. “Sometimes, preferential treatment involved gifts or special favors. While buying a patient a gift is a nice gesture, it may appear more exclusive than is intended and doesn’t go unnoticed by other patients and families.”

As the nurses discussed how to implement family-centered care more effectively—specifically, the complex issue of setting relationship boundaries between patients/families and hospital staff members—they quickly realized that, before they could proceed further, foundation building was needed.

“There weren’t any clear guidelines,” says McKlindon. “We were trying to think about family-centered care in new ways, but structures didn’t exist to help staff and/or family members visualize what those relationships might look like, or should or could look like.” To explore the issue further, Barnsteiner collaborated with members of the staff and a consultant, Joanne Gillis-Donovan, RN, PhD, clinical associate professor of nursing at the University of Pennsylvania School of Nursing.

Empowering families and caregivers
The purpose of family-centered care at CHOP was to include families as “full partners” in children’s health care, but reality did not always measure up to the goal. In the absence of clear guidelines, some families’ under-utilized services available to them and, as a result, lacked the empowerment needed to contribute effectively to their children’s health care. Yet others, taking advantage of the situation, made unrealistic demands of caregivers. For nurses trying to be responsive to the needs of patients and their families, lack of clarity with regard to roles and responsibilities blurred the lines between work life and home life, making it difficult to balance the two.
 
“Using a systems framework, specifically Bowen’s Family System Theory (Bowen, 1985), we did an overall assessment of the most common issues and problems that people felt they struggled with,” McKlindon explains. “They included everything from preferential treatment of patients and staff members, gift exchanges, expectations of family members that nurses spend time with patients and their families outside scheduled work hours, carry on relationships with them outside the hospital, or care for their children in their homes—for example, providing babysitting.”

The resultant policy provided guidelines for developing and maintaining “therapeutic relationships” between caregivers and the patients/families they served. A therapeutic relationship, as defined at CHOP, is “an interactive relationship with a child and family that is caring, clear, boundaried, positive and professional. It encompasses the philosophy of the institution, empowerment of the caregivers and empowerment of the patient/family.”

Documented in a 1990 article titled “Being related and separate: A standard for therapeutic relationships” (Barnsteiner & Gillis-Donovan, 1990)—the first to be published outside the psychiatric literature—the initiative raised eyebrows and stimulated debate. Some feared that developing a formal framework for nurse/patient relationships was a bad idea, that it would inhibit development of effective relationships, while others viewed it as a positive development, a topic needing further exploration.

It was immediately apparent to both nursing and hospital administrators at The Children’s Hospital of Philadelphia that support was needed to teach, implement and refine the guidelines as part of a nursing care standard. Money was allocated to hire two advanced practice nurses—specialists in mental health—to achieve these goals. McKlindon, the first to be recruited, joined the program in July 1988. Steinmiller came on board in 1998, and Anderson began five years ago.

“We started out with a focus on the department of nursing,” observes McKlindon, “but we never provided service exclusively to nurses. Focusing on communication and collaboration, we work with teams across the board.” For a hospital that employs approximately 10,000 people in its inpatient and outpatient campuses, “across the board” translates into a significant number of people.

“We have the hospital divided into thirds,” Anderson explains, “and we are available to all staff members who are part of the patient care interdisciplinary teams. We are always scanning and assessing staff members’ levels of stress. We understand that this stress is multifaceted, and one contributor is the challenge of maintaining therapeutic relationships. Feeling too close to or distant from a patient or family member can be emotionally exhausting for staff members already working in a demanding environment. To assist, we are available for individual or targeted-team consultation.”

What caring for the caregiver entails
For nurses at The Children’s Hospital of Philadelphia, practices that foster or hinder therapeutic relationships are spelled out in fairly specific terms in a seven-page nursing standard. In the final analysis, however, the guidelines are just that—guidelines.

“We learned, over time,” says McKlindon, “that relationships are pretty gray, not very black and white, so we tried to give people principles to think about in approaching care. For example, if you want to do something for a particular patient and family, step back and ask yourself, ‘Would I, could I, should I do this for every patient and family I care for?’ That’s something we coach people to think about, to try and get a broader perspective on how things we do in relationships have impact beyond what we can see at the moment.”

The nursing standard also clarifies boundaries: “A clear boundary is one that is well-defined, allowing the caregiver to be positively related to, yet professionally separate from, the patient/family. This contrasts with and is preferable to a rigid boundary, where the caregiver is unempathetic, non-nurturing and mechanical toward the patient/family, or a diffuse boundary, where the caregiver is overly involved and overly identified with the patient/family.”

To help caregivers recognize a diffuse boundary, the standard deems the following behaviors unacceptable: a) buying snacks, meals for children/parents; b) inviting parents or patients to join staff members in social activities or parties; c) accepting personal gifts from families; d) traveling with families; e) providing clothes, toys and gifts; f) doing patient/family laundry; g) babysitting; and h) sharing personal information, i.e., home phone numbers and e-mail/home addresses. The clinical nurse specialists in mental health at CHOP have worked with administration to address these needs hospital-wide. For example, through the Child Life Department, there is now a system to acknowledge every child’s birthday.

The standard also provides questions nurses need to consider when deciding whether or not to share personal information with patients and/or their families: a) Whose needs does the disclosure meet (staff member or patient/family)? b) How will what I am sharing be perceived? c) What is the purpose, the intended impact? d) Does this have the potential to shift the focus off the family to me? Is that useful? e) How will this impact the relationship?

The primary purpose of the guidelines is empowerment—of the family and the caregiver. “We work really hard with staff members to help them figure out how to empower a parent during a hospitalization,” says Steinmiller. “It’s not always clear, especially if the family is unable to be at the hospital. In the NICU context, for example, a first-time parent doesn’t know how to even be a parent, let alone be the parent of a critically ill child.”

Steinmiller emphasizes that the therapeutic relationships standard is not punitive. “I’m not a policewoman walking around looking to get staff members in trouble. We’ve put these guidelines in place because if people have good boundaries—clear and caring relationships with patients and families—we’re going to keep them working with us for the long haul. Families will get what they need, and staff members will get what they need.

“Inappropriate relationships,” she continues, “really contribute to patient and family dissatisfaction and also to staff burnout. We prefer if people come to us on their own volition to say that they need help with a relationship, but often people are referred to us and we try to coach them through. How do you get back to an appropriate relationship? What road have you gone down? How is it affecting your wellness and stress? How can we help you through that?”

“We’re not asking staff nurses to act differently than what our professional standard holds them to,” says Steinmiller. “The CHOP standard is definitely supported by the American Nurses Association code of ethics, and state boards of nursing. Nor are we asking people to practice differently than is required by other professions (e.g. social work or psychology) or the American Academy of Pediatrics. What we are asking people to do is not unreasonable.”

Educating new staff members at The Children’s Hospital of Philadelphia about therapeutic relationships starts at the very beginning of their employment. “We teach every nurse who comes into the hospital about the program and about our role, that we are a resource to them and not only with regard to therapeutic relationship issues,” says Anderson. “We recognize that coming into the system can be very stressful—negotiating with your preceptor, understanding the team you’re joining, etc. From the very beginning, we tell new employees that their mental health and wellness are very important, and we are there to support that.”

“Individually and via support groups, we provide opportunities for employees to come together and talk about common kinds of stress,” says McKlindon. “It can be everything from trying to figure out how to read your paycheck to balancing emotions around the holidays. Or, it could be about your first experience with a patient dying. Any staff member can consult with us. They don’t need permission and don’t need to go through a formal process. ”
 
Hospital-wide and multifaceted
In a white paper, Anderson, McKlindon and Steinmiller (2004) observe: “The role of the clinical nurse specialist in mental health at The Children’s Hospital of Philadelphia is to improve nurse-patient/family relationships and enhance team communication and collaboration.” Central to that job description are the words “communication” and “collaboration.” Add to that the word “intervention.”

“The CNS in mental health,” they write, “is ideally positioned to support the resilience and wellness of staff by implementing a strength-based model of intervention. By using varied, evidence-based, and effective interventions, the CNS in mental health can lead individuals and teams to clearly communicate what is in the best interest of the patient/family and the team.” These interventions assume a variety of forms, with the CNS either chairing or participating.

In September 2007, Schwartz Center Rounds were inaugurated. They are funded by a grant from the Kenneth B. Schwartz Center, a nonprofit organization committed to the promotion of a health care system where caregivers are compassionate and engaged. The rounds foster communication among caregivers about their emotional responses to selected cases. Facilitated by Steinmiller, the monthly gatherings focus on a particular issue and, unlike typical medical rounds, are conducted in a seminar-type setting.

A recent theme was “Nowhere to go: Providing care to patients with complicated discharges.” A multidisciplinary panel of two physicians and a nurse presented cases that involved difficult discharges. For such patients, home is often not a good environment, yet there are few options available.  After discussing their own experiences as care providers, the presenters encouraged audience members to talk about their feelings in similar situations, thus promoting communication and encouraging teamwork.

Another form of intervention is CHOP’s Complex Care Consultation Team. The team, chaired by Steinmiller, provides consultation service to other teams who feel “sort of stuck with a patient and his or her family,” says Steinmiller. “Perhaps they are at a therapeutic impasse in a patient’s care or feeling very frustrated. Maybe a family has started to display some challenging behaviors, and staff members don’t know how to respond.” The team at large or any member of it may approach the Complex Care Consultation Team, which, after learning in confidence how caregivers are currently dealing with the situation, suggests resources and makes nonbinding recommendations.

McKlindon currently co-chairs the Hospital-Wide Ethics Committee, a standing committee of the CHOP medical staff that deals with ethical issues. The committee’s duties include serving in a consultative role to staff members, families and patients. In addition, McKlindon and Anderson are members of the Physician’s Health Committee, which looks at various professional issues for the medical staff.

Anderson, McKlindon and Steinmiller also serve on a committee that, in addition to promoting a drug-free workplace, addresses the issue of impaired professionals. “The impaired professional program focuses on a specific group,” says Steinmiller, “but we also see employees with depression and anxiety. We try to help them link to outside resources and, when they come back to work, to cope successfully.”

“I think it’s really great that The Children’s Hospital of Philadelphia recognizes that nurses in particular are 24/7 at the bedside,” says Anderson. “Nurses develop very intense relationships and close ties to people’s lives. So to support them in negotiating these relationships is, I think, phenomenal.” RNL

James E. Mattson is editor of Reflections on Nursing Leadership.

References:

Anderson, K., McKlindon, D., & Steinmiller, E. (2004, December 29). White paper: The role of the clinical nurse specialist. (Available from Elizabeth Steinmiller.)

Barnsteiner, J.H., & Gillis-Donovan, J. (1990). Being related and separate: A standard for therapeutic relationships. MCN, The American Journal of Maternal-Child Nursing, 15, 223-228.

Bowen, M.  (1985). Family therapy in clinical practice.  Northvale, NJ: Jason Aronson Inc.