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Pediatric Narrative Oncology: Interprofessional Training to Promote Empathy, Build Teams, and Prevent Burnout
Stephen A. Sands, PsyD, Patricia Stanley, MA, and Rita Charon, MD, PhD
he practice of pediatric oncology demands empathy, teamwork, and resilience from doctors, nurses, social workers, and therapists who care for children with cancer. Empathy enables caregivers to recognize patients and their families in full, offering hope and conveying both competence and commitment to them.1 Teamwork, with its obligatory honesty and trust, allows the multiple professionals to amplify their individual disciplines power to help ill children. Resilience in caregivers can protect against the burnout and defeat common in this eld. Unlike other medical elds in which recovery is common or death sometimes acceptable, pediatric oncology taunts professionals with the random unfairness of serious disease that befalls children. Even with the rise of successful treatment of children with cancer, those who are engaged in providing care can experience guilt and rage and often respond with detachment and withdrawal. The isolated or defeated professional burns out and can help no one, but empathy, teamwork, and resilience can reconnect these caregivers to patients, to colleagues, and to themselves, letting them again deliver effective and nourishing care. Many medical educators worry that these capacities are difcult to teach.2 Recent developments in medical education suggest that empathy, teamwork, and resilience may be attainable through training in narrative competence; that is, the capacity to understand stories, to see events from others points of view, to recognize singular persons, and to reect on ones experience.36
Manuscript submitted March 13, 2008; accepted July 14, 2008. Correspondence to: Stephen A. Sands, PsyD, Herbert Irving Child and Adolescent Oncology Center, Columbia University College of Physicians and Surgeons, 161 Fort Washington AvenueIP7, New York, NY, 10032; telephone: (212) 305-3649; fax: (212) 305-5848; e-mail: ss2341@columbia.edu
J Support Oncol 2007;6:307312 2008 Elsevier Inc. All rights reserved.
Abstract The aim of this study was to test the feasibility and effectiveness of providing narrative training to a mixed group of doctors, nurses, social workers, and child life therapists on a pediatric oncology service for the purpose of promoting empathy, building teams, and preventing burnout. All staff members were invited to attend a weekly narrative training seminar for 6 weeks. During these seminars, participants wrote about their attachment to patients, their emotional responses to patients and families, and their attempts to imagine clinical situations from the perspectives of patients and family members; participants then read aloud their narratives to one another during a facilitated discussion. Baseline and post-intervention assessments used the Interpersonal Reactivity Index (IRI) and the Stressor Scale for Pediatric Oncology Nurses (SSPON), and a focus group was convened to assess qualitative outcomes at the studys conclusion. Nineteen staff members who consented and participated in the training completed all baseline and postintervention measures. THE IRI subset of Perspective Taking improved at a statistically signicant level (P = 0.029), and the Empathic Concern subset trended toward signicant improvement (P = 0.056). Reported stress levels on the SSPON increased at varying rates over the course of the study. Focus group reports indicated that teamwork and resilience improved in the 6 weeks of the seminar. A narrative training approach aimed at an inter-disciplinary group of healthcare professionals has promise as a means to address some of the most difcult aspects of pediatric oncology care facing clinicians.
Medicine practiced with such competence is coming to be known as narrative medicine.7,8 By providing healthcare professionals with advanced narrative skills, narrative training has been shown to help clinicians listen empathically, build effective therapeutic alliances with patients and colleagues, and reect on practice and the self.914 Narrative thinking is also seen as instrumental in diagnostic reasoning, theorizing, ethical awareness, and alliance-building with patients.1517 Narrative interventions in a range of healthcare professions share a theoretical orientation that values narrating as an avenue toward empathy and reection in clinical work.1822
Dr. Sands is Assistant Professor, Departments of Pediatrics and Psychiatry, Ms. Stanley is Guest Faculty, Program in Narrative Medicine, and Dr. Charon is Professor of Clinical Medicine, Department of Medicine, and Director and Founder, Program in Narrative Medicine, Columbia University College of Physicians and Surgeons, New York, New York.
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The most highly skilled technical care will not effectively reach the patient unless the provider is equipped with the interpersonal skills to recognize the patients situation and join empathically with the patient during care.2325 Medical, nursing, and social work schools, residency training programs, specialty boards, and societies have endorsed the goals of building empathy in practice.2630 Instead of earlier models of training for empathy, conceptualizing it as an emotional state like sympathy or pity, recent efforts focus on the shifting of perspective necessary for one person to be able to imagine the situation of another.31 Less an affective than a cognitive and imaginative goal, empathy can be nurtured by helping health professionals to perceive, describe, and then behold the singular situations of their patients.32,33 Once the patient has been illuminated by this shift in perspective, the healthcare professional is in a position to witness the suffering and courage of persons in his or her care and develop authentic relationships with them.34,35
BUILDINg TEamS
sense of failure among US oncologists.45,46 The nursing literature also nds that oncology nurses experience greater-thannormal levels of despair, social isolation, and somatization.4751 Doctors and nurses with higher levels of burnout are found to communicate less effectively with patients.52
Because contemporary oncology practice demands wellfunctioning multidisciplinary teams, cohesiveness and shared commitment to expert clinical care must be maintained.36 Highly stressed professionals often remain within their own culturedoctors talk to doctors, nurses to nurses, and social workers to social workersto deal with the emotional tolls of care in the face of extraordinary stress.37,38 Although mechanisms exist for interdisciplinary clinical rounds, the individual professionals rarely share their own personal or emotional plights with members of the team in other professions. As a result, the team can fracture along disciplinary lines, and the individual professionals perspectives often clash. Adding to the suffering of patients and their families are the often poorly masked disagreements among team members about the optimal course of action, leading to inefciency and error.39,40
STRENgTHENINg RESILIENCE aND REDUCINg bURNOUT
Burnout is a response to chronic emotional stressors on the job and is dened by exhaustion, cynicism, and inefcacy in the workplace. Aspects of such jobs in healthcare, including technically demanding care, gravely ill patients, prevalence of negative outcomes, and a scarcity of resources, predict high levels of burnout and characterize inpatient pediatric oncology.41,42 Burnout has been associated with negative changes in job performance such as absenteeism, intention to leave the job, increased personal conict, and reduced effectiveness and may lead to more serious consequences, including depression and substance abuse.43 These ndings have direct consequences on the quality of patient care, as a number of studies have found a direct relationship between medical staff turnover and risk-adjusted mortality scores, severity-adjusted length of stay, and medical errors.44 Several studies have reported a high incidence of burnout, depression, anxiety, low self-esteem, and
The 19 participants worked on the pediatric oncology inpatient unit during the period of intervention and completed both
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the baseline and follow-up questionnaires (see Measures). This sample consisted of 6 physicians (31.6%), 12 nurses (63.2%) and 1 psychosocial member (5.3%); their average age was 41.1 years old, and they averaged 11.7 years in their eld. This group attended an average of three sessions broken down as follows: six attended one session (31.6%), three attended two sessions (15.8%), two attended three sessions (10.5%), two attended four sessions (10.5%), two attended ve sessions (10.5%), and four attended all six sessions (21.1%). Columbia University Institutional Review Board approval was acquired, and participants read and signed informed consent for participation through the Columbia Cancer Center Protocol Ofce. The Health Insurance Portability and Accountability Act and condentiality issues were explicitly addressed at the start of the seminar series, and all names and identifying data of patients were excluded from the writing to protect condentiality.
SampLES
SampLE #1: ONCOLOGIST They are not your run-of-the-mill family, although I guess they are just one more version of the not happy family category. Drug abuse, alcohol abuse, rotating relationships dene the adulthood of both parents. The boy morphing into a man with the cancer eating away at his bones inherited most of the habits. These are habits that have stayed around for the year of chemotherapy, probably helping sometimes. Most of the time they struggle against one another. But today with the cancer back, they are more together than I have ever seen them. Their fear and pain bind them together, make them more like a family, but still not a happy one. SampLE #2: SOCIAL WORKER Watching him run in the clinic with his backpack of TPN [total parenteral nutrition] attached to him, it brings a huge smile to my face and I am amazed at how far he has come since his transplant. A few months ago he was in and out of the hospital constantly, never smiling, and at high risk for potentially fatal complications. There were times when the end seemed near. Now he is a little boy acting like a little boy, which is a miracle. The unfortunate twist is that he is not living at home with his family. And he seems to have ourished in his new environment at [the rehabilitation hospital]. What will happen when he returns home? For now, I look forward to his smile and interaction and think just how far he has come both medically and socially. SampLE #3: NURSE My patient is a lovely, preteen girl. Her mother and aunt are attractive, pleasant, and most polite. And gracious. Most patients look relatively healthy, although bald and connected to wires. They still look like average kids, playing videos and watching TV. My patient is forced to wear her cancerous growth on her face. Over the past 2 weeks, the growth seems to be getting larger and uglier. She can barely breathe as the growth has completely covered her nose and part of her mouth. She can only lie in bed and cry. Is it pain, or just sorrow? Perhaps a bit of both. I gave her a DVD Lizzie McGuire movie, and she laughed, just like my child would have. I know that everything is being done to help this girl, and I wonder at an existence, which we all share, that could allow such outward and inward suffering. I am always amazed at the graciousness of her mother whenever I do her a small favor. I wonder how she can continue in this way, and how it will end, ultimately.
The Box contains writing samples, reproduced in their entirety, from an oncologist, nurse, and social worker. These sample texts demonstrate the range of concerns raised in the narrative work of the seminar. One session included expressions of despair, gratitude, rage against fate, and pride in the miraculous abilities of medicine. Participants made efforts to adopt the perspectives of the patients or their family members, putting words to the impressions that gather over time. As these words were read aloud, other members of the seminar added their own impressions of the subjects, sometimes contesting the writers interpretation and sometimes expressing gratitude to have another perspective on a complex situation. Individual healthcare professionals did not dwell on their own disciplinary concerns. Instead, the nurses and doctors and social worker reached under the differences among them toward such shared concerns as sorrow, easing suffering, sense of defeat, and recognition of those who are in need of care.
MEaSURES
All consenting participants were asked to complete both the Interpersonal Reactivity Index (IRI) and the Stressor Scale for Pediatric Oncology Nurses (SSPON) before the rst seminar and at the close of the study period. The IRI is a 28item self-report scale to assess the cognitive and emotional components of empathy. Each item is scored on a Likert scale from 0 to 4, with responses ranging from does not describe me well (0) to describes me well (4). Within the index were four seven-item subscales: Perspective Taking: ability to adopt others points of view; Fantasy: the use of imagination to experience the feelings of others; Empathic Concern: the regard for anothers feelings; and Personal Distress: the anxiety and discomfort in the face of another persons negative experience.53 Spinella et al showed that the four scales have reasonable psychometric properties.54 The SSPON measures the internal and external environmental events and conditions that can alter a pediatric oncol-
ogy emotional or cognitive state and thereby produce physical or psychosocial reactions.55 The SSPON uses a visual analogue format comprising horizontal lines through which the respondent is asked to draw a straight line for each statement ranging from not at all stressful (0) to as stressful as can be (1000). The SSPON examines six factors: Co-worker Incompetence: perception of co-workers insensitivity towards patients conditions or incompetence in professional tasks; System Demands: competing role-related tasks, contending priorities,
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Table 1
2.6 (0.63) 2.0 (1.1) 3.3 (0.45) 1.3 (0.54) 2.3 (0.44)
2.9 (0.59) 2.1 (0.97) 3.2 (0.63) 1.1 (0.44) 2.3 (0.42)
= 0.018) after the intervention, whereas both disciplines reported similar levels of distress on all other ve domains at both pre- and post-assessment. Additionally, a similar analysis between the responses of the two disciplines on the IRI did not demonstrate any statistical signicance between doctors and nurses, with the exception of an increase in the Fantasy scale for physicians at time 2 (P = 0.017; Tables 3 and 4).
FOCUS GROUp REVIEw
ineffective teamwork, and time constraints; Knowing What Is Ahead: awareness of impending difculties and suffering for patients; Limits of Care: awareness and frustration for the limitations in relieving patient suffering; Emotional Demands: the personal stress endured by professionals regarding patient care and execution of tasks; and Death Without Grace: belief that patients do not die a gentle death.
Results
Pre- and post-IRI questionnaire responses (n = 19) were analyzed using a paired t-test and indicated that the participants demonstrated an increased ability for Perspective Taking over time (P = 0.029). This difference included healthcare professionals of all disciplines and was not dependent on their years in the eld. There was also a trend toward signicance of improvement in the Empathic Concern rating (P = 0.056), although there were no signicant changes from baseline to post-intervention within the domains of Fantasy or Personal Distress (Table 1). Analyzing the pre- and post-intervention SSPON ratings with paired t-tests indicated that all the mean scores increased at various levels from baseline to follow-up, revealing an increase in perceived level of stress over time. Specically, the participants reported signicant increases in the level of stress reected by the Death Without Grace score (P = 0.008) and Co-Worker Incompetence score (P = 0.022), whereas the remaining domains did not (Table 2). Analyzing the SSPON responses of 18 physicians and nurses who completed the pre and post-assessments using a t-test analysis indicated that nurses reported a higher level of stress around the System Demands than did the physicians (P Table 2
A focus group of 14 participants was convened by a member of the educational research division at Columbia University Medical Center in the last week of the intervention. The focus group participants observed that the Pediatric Narrative Oncology seminar was a special experience that allowed individuals to consider, evaluate, and express their everyday experiences through writing and meaningful communication with one another. Individuals reported that the experiences they examined in the narrative seminar were experiences they otherwise would not have reected upon. Many participants stated that they encountered professional perspectives that they were not aware their colleagues held. Three themes emerged from this 1-hour focus group. 1) The seminar revealed new aspects of the self of the individual writer. Narrative seminars were found to differ from just talking. Participants discovered that to write reectively about an experience, they had to undergo an introspective process whereby they exposed themselves and their experiences in a new manner. Individuals reported both positive and negative feelings about doing so. They indicated that sharing the writing within the seminar was an important component in this process. 2) Participants observed that the responsiveness of the writing and sharing process transferred to the interprofessional interactions of team members outside the focus group setting and in the natural work environment. For example, upon encountering a particular child who was discussed in the seminars, some participants would reect thoroughly on the patients needs and on the context of that childs condition and care. Others reported being far too busy to have time to think and that the only place to do such reective activity was in the groups. A number of individuals reported learning more and gaining insight about other members of their groups, such as where they came from, their professional perspective, and their level of caring.
Co-worker Incompetence System Demands Knowing What Is Ahead Limits of Care Emotional Demands Death Without Grace
634.01 (209.35) 598.85 (148.57) 556.82 (149.12) 673.13 (132.71) 525.19 (159.87) 574.66 (246.7)
704.91 (167.13) 645.92 (145.49) 595.79 (151.9) 682.60 (109.7) 584.71 (123.78) 690.00 (171.33)
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Table 3
Time 1 Co-worker Incompetence System Demands Knowing What Is Ahead Limits of Care Emotional Demands Death Without Grace Time 2 Co-worker Incompetence System Demands Knowing What Is Ahead Limits of Care Emotional Demands Death Without Grace
586.56 (267.11) 618.72 (137.8) 562.50 (174.31) 696.11 (135.36) 564.05 (206.28) 567.92 (260.63) 634.44 (199.04) 611.69 (212.59) 569.67 (160.11) 671.14 (130.82) 588.65 (164.03) 728.33 (194.16)
688.35 (150.24) 623.59 (104.24) 580.79 (111.88) 684.64 (114.58) 527.95 (123.29) 569.67 (260.29) 749.44 (147.29) 678.47 (95.83) 612.00 (159.11) 693.07 (106.92) 592.23 (107.67) 682.50 (168.1)
0.129 0.326 0.240 0.676 0.258 0.990 0.133 0.018 0.755 0.419 0.145 0.965
3) Participants observed that the structure and timing of the narrative seminar need to be carefully considered so as not to conict with clinical duties.
among doctors and nurses, potentially leaving a more cohesive and attentive healthcare team in its wake.
Discussion
This pilot study demonstrated the feasibility of being able to provide a brief staff intervention on a busy inpatient medical unit where participants from a range of specialties united to write about their attachment to patients, their emotional responses to patients and families, and their attempts to imagine clinical situations from the perspectives of patients and family members. The hypothesis that narrative training can increase empathy was supported by the signicant increase in Perspective Taking scores and the near-signicant increase Empathic Concern scores on the IRI. The team-building hypothesis of the study was supported by the focus group reports of transactions that emphasized the dividends for individual participants of learning about one another as people and glimpsing into their perspectives on the care of children on the unit. The participants also observed, even in this short feasibility study, that the relationships nurtured in the seminar spilled over into the teams function on the unit. Additionally, the activity of narrative writing was found by participants of various professional disciplines to be useful and even pleasurable. Participants found that it improved their ability to reect on their work and their understanding of their team members. The ndings of the SSPON suggest that stress levels do not decline over time by virtue of this intervention. This is not a bandage for suffering or a salve for stress. Instead, the writing may make participants, if anything, more aware of the unfairness and the suffering encountered in pediatric oncology. However, the intervention provides some commonality of the experiences of caring for dying children, as suggested in the nearing of scores
Conclusion
These ndings suggest that narrative training for interdisciplinary groups of healthcare professionals may be a promising method for improving both the clinical care provided and the lived experiences of the professionals. Future work will require larger samples to validate the ndings, more rigorous outcomes measures in team-building and preventing burnout, and extended follow-up measures of healthcare professionals resilience and commitment to clinical work.
ACkNOwLEDgmENTS
We acknowledge the contribution of all participants in this pilot study, without whose generosity and creativity this work would not have been possible.
Table 4
Time 1 Perspective Taking Fantasy Empathic Concern Personal Distress Time 2 Perspective Taking Fantasy Empathic Concern Personal Distress
2.69 (0.62) 2.64 (0.92) 3.33 (0.49) 1.43 (0.47) 2.95 (0.48) 2.91 (0.72) 3.22 (0.7) 1.12 (0.57)
2.55 (0.68) 1.75 (1.1) 3.38 (0.47) 1.34 (0.6) 2.89 (0.63) 1.79 (0.9) 3.23 (0.54) 1.09 (0.4)
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