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Abstract |
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 Top Abstract My Tapestry’s OriginsTapestry EvolutionTapestry Transfiguration and...Tapestry Transformation: A Work...References |
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DISTINGUISHED RESEARCH LECTURE Presented May 17, 2004, at the AACN National Teaching Institute in Orlando, Fla To receive CE credit for this article, visit the American Association of Critical-Care Nurses’ (AACN) Web site at http://www.aacn.org, click on "Education" and select "Continuing Education," or call AACN’s Fax on Demand at (800) 222-6329 and request item No. 1191.
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When I was nominated for this award more than a year ago, my mom had just died. While preparing dinner that night with Philip, my then 16-year-old son, I told him how thrilled I was to receive this nomination and I confessed that I was in no condition to complete the required application form. "Mom," he said, "you always taught me that to make a difference in life, you need to try—to give it your best effort. This sounds important. You need to try." And so I did. I would like to dedicate this presentation to my mom and to my son, who have taught me so much, and also to my husband, Philip, and daughter, Angela, who understand these realms.
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My Tapestry’s Origins |
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TopAbstractMy Tapestry’s OriginsTapestry EvolutionTapestry Transfiguration and...Tapestry Transformation: A Work...References |
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These were powerful clinical events that served as a catalyst for unrest, questions, and a search for answers and prompted me to begin weaving a tapestry in my own design.
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Tapestry Evolution |
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TopAbstractMy Tapestry’s OriginsTapestry EvolutionTapestry Transfiguration and...Tapestry Transformation: A Work...References |
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It was about this time that I met my soul mate, Barbara Dossey. We were at the same turning point in our careers. She shared the same frustrations. She, too, was looking for something more. Together, we began to question the tenets and assumptions of the biomedical model that taught us to concentrate on only the body. We explored alternative frameworks that embraced holism and body-mind-spirit unity. We searched for documented research that clarified the healing effects of consciousness on the body. We analyzed how a holistic model might be translated into concrete implications for bedside practice. We examined approaches to consciousness that patients could use to activate the potential for healing that is inherent in all individuals. We learned and personally experienced integrative body-mind therapies such as relaxation, music therapy, and imagery. We asked whether these therapies could be effective in helping patients shift their fear, stress, and negative images of their illnesses. Could they be used to guide patients in preparing and rehearsing for positive outcomes following surgery? Could body-mind strategies be combined with pharmacological interventions to manage severe pain? We began to explore ways in which the best of conventional medicine might be combined with suggestion, therapeutic presence, breathing exercises, head-to-toe relaxation scripts, guided imagery, music therapy, and biofeedback. Then we wrote about these approaches in various coauthored books to share with our colleagues.2–21 My tapestry was changing. It was taking on new direction, form, and purpose.
| "I felt the helplessness of giving a powerful analgesic to a patient in pain . . . only to observe the patient’s continuing pain and fear, with nothing more to offer."
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Tapestry Transfiguration and Validation |
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TopAbstractMy Tapestry’s OriginsTapestry EvolutionTapestry Transfiguration and...Tapestry Transformation: A Work...References |
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Music Therapy
Although my scientific endeavors have followed some traditional paths—for example, in my first studies, I looked at postinfusion phlebitis, nursing diagnoses, and brain death—I began to recognize that my passion for research centered on body-mind-spirit healing. At the Catholic University of America in the 1980s, I consulted with the music therapy faculty to develop a relaxation and music therapy study aimed at reducing the psychophysiological stress associated with acute myocardial infarction.22 The study was one of the first federally funded music therapy investigations. Designing the study and obtaining federal funding were easy compared with securing approval from the institutional review boards (IRBs) and the medical directors of the coronary care units (CCUs) at the 3 Washington, DC, hospital centers where I conducted the study.
| Patients’ perceptions and opinions are powerful in changing providers’ attitudes and practice.
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IRB members, whose experience was only with biomedical drug and device studies, were flabbergasted that a nurse proposed a psychophysiological relaxation study for heart patients. One IRB chair outright challenged me: "You want to do what? In the CCU?!" A medical director chuckled, and told me that what I was doing was ridiculous. I knew that people snickered (did I say laughed?) at this study. Because this was nothing new, I was prepared. I had encountered similar snickering many times before because of my presentations on body-mind-spirit healing and because of my first book, Critical Care Nursing: Body-Mind-Spirit.2 However, federal funding lent some respect to the study, and despite the reservations of many physicians, it moved ahead. Several months later, as patients began reporting the benefits of the intervention, physicians began to take notice, ask questions, and get involved. In fact, when I finished the study, the snickering medical director asked whom he might hire to continue such therapy with his patients. An amazing thread of insight was added to my tapestry: patients’ perceptions and opinions are powerful in changing providers’ attitudes and practice.
In this music therapy study, 80 patients were randomly assigned to 1 of 3 groups: (1) a relaxation group, where they participated in a head-to-toe relaxation session guided by the researcher, then focused their concentration on their breathing for 20 more minutes; (2) a relaxation and music therapy group, where they participated in the same relaxation session, then focused their attention on soothing music for 20 minutes; or (3) a control group. The results revealed that both relaxation and music therapy significantly lowered heart rate, lowered peripheral temperature, and reduced cardiac complications.22 Most patients positively evaluated the intervention. One of my most memorable patients was a 62-year-old chief of military police. After one of his sessions he said, "I can’t believe what just happened to me. No one ever told me how to relax. I didn’t even know how it felt until now. This stuff really works."
Pain-Free Initiative
Working as a research consultant at Children’s Medical Center of Dallas in the 1990s, I started teaching a 3-month, noncredit clinical research course sponsored by our nursing research committee. In this course, each participant develops a clinical research proposal that is ready for IRB approval and implementation. Each year, 20 to 30 experienced professionals enroll in the course. They represent a variety of disciplines and bring stunning clinical problems to investigate. Yet most of them have never been involved in research, given formal presentations, or written a paper for publication.
I started the course at the same time that I became involved with the hospital’s pain-free initiative. The aim was to create a pain-free environment for every child by developing the best pharmacological and nonpharmacological approaches for body-mind-spirit pain management. The members of this initiative started the project with an attack on the one thing that children fear the most: needles. After much effort spearheaded by our clinical nurse specialist, Renee Manworren, and the pain management service, it became standard practice at Children’s Medical Center of Dallas for every child to receive a topical anesthetic such as a eutectic mixture of local anesthetics (EMLA), ethyl chloride, or Fluori-Methane (Gebauer Co, Cleveland, Ohio) for nonemergent needlestick procedures.
Of course, the problem with EMLA, the anesthetic most frequently used at our institution, is the 60-minute delay before it is effective in reducing needlestick discomfort. This delay is particularly problematic in the fast-paced environment of transporting critically ill children by ambulance, plane, and helicopter. Transport nurses Scotti Floyd, Lynn Chase, and Amy Wilson were clear about the clinical problem when they entered the research course. No products were available to provide effective dermal anesthesia during needlesticks for critically ill children being transported. The nurses had discovered, however, that a new laser assist device (LAD-06, Norwood Abbey Ltd, Chelsea Heights, Victoria, Australia) used in conjunction with L-M-X 4 (Ferndale Laboratories Inc, Ferndale, Mich; 4% lidocaine in a liposomal delivery system) provides effective dermal anesthesia in 5 minutes for adults. It had not been evaluated with children. As of this writing, the nurses have finished the course and are preparing to evaluate the effectiveness of the LAD-06 and L-M-X 4 in children (S. Floyd, L. J. Chase, A. Wilson, R. Manworren, C. E. Guzzetta, unpublished data, May 2004). If this intervention is found effective, perhaps in the future no child will need to endure the discomfort of a needlestick during venipuncture, intravenous catheter insertions, or even immunizations.
Body-Mind Interventions for Managing Pain. While setting up policies and standards to implement the best pharmacological strategies for pain management, we simultaneously investigated various body-mind interventions. We began by exploring the use of distraction for procedural pain management. Distraction directs attention away from pain stimulation to refocus on the distraction.23 Because humans have a limited capacity for processing information, if we are fully engaged in one task, we have limited attention for another.24 Humans simply cannot think about 2 things at the same time. Just ask any woman who is trying to converse with her husband during a football game. Effective distracters provide as much sensory input as possible, including auditory, visual, tactile, kinesthetic, and olfactory stimulation. Because children can be distracted easily and distraction is a simple strategy to use, we focused a series of studies on this body-mind intervention.
| Distraction directs attention away from pain....Humans simply cannot think about 2 things at the same time.
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While taking the research course, child life specialists Kim Cavender, Melinda Goff, and Ellen Hollon developed a study to determine the effectiveness of a parental positioning-distraction intervention during needlesticks when children were seen in our pediatric emergency department. This study was funded, presented at a national meeting, and published.25 Forty-three children 4 to 10 years old who were having needle-sticks were randomly assigned to either a standard care group that included parental presence and an explanation of the procedure or an experimental group that received standard care plus parental participation in using a positioning-distraction intervention. Parents learned to position their child on their lap for the venipuncture in either a chest-to-chest or a sidesaddle sitting position. Each child in the experimental group then chose 1 of 3 distracters: a kaleidoscope, an I SPY: Super Challenger book, or a lift-and-look book. Parents also learned how to engage their child with the distraction during the procedure. Pain, fear, and distress were measured. The study findings suggest that the parental positioning-distraction intervention could enhance positive clinical outcomes, with a primary benefit of decreased fear.
Several new tapestry threads resulted from this study. Although EMLA was not used because it was not the standard of care at the time, we now know that topical anesthetics should be included in future studies. We learned that parents are willing, able, and effective in facilitating their child’s coping during a painful procedure when given a clear role, guidance, and coaching. We found that allowing a child to sit on a parent’s lap also reduced the resistance and fear often experienced by those who routinely are required to lie flat on a treatment table during a procedure. But perhaps the most exciting outcome was that after our emergency department staff had an opportunity to observe the benefits of having child life specialists, such specialists now have been hired in our pediatric emergency department.
During another research course, oncology nurses Suzanne Sander Wint, Debra Eshelman, and Jill Steele explored the use of distraction in other settings. They studied pain in teenagers wearing virtual reality glasses during lumbar punctures. This study was funded and the findings were published,26 presented at 2 national nursing meetings, and recognized with 2 national awards.
Adolescents with cancer undergoing lumbar punctures were randomly assigned to 1 of 2 groups: a standard care group that received parental presence, an explanation of the procedure, EMLA, and sedation or an experimental group that received standard care plus distraction with the virtual reality glasses. These glasses are similar to oversized sunglasses with earphones attached. Placed in a standard side-lying position for the lumbar puncture, teens in the experimental group listened to stereo music while watching the accompanying 3-dimensional virtual reality video. The video is characterized as a multidimensional sight-and-sound experience; the visual input is so diverse and changes so quickly that there is little time to process and recognize an event before the next input appears.
Unfortunately, after 6 patients were enrolled in the study, the virtual reality glasses, television, and video—all bolted down to a moveable table and locked in an office—disappeared one weekend. It is difficult to continue an intervention study when the intervention rolls out the door. Nonetheless, we regrouped, found money to buy more equipment, bolted it to unmovable treatment room cabinets, and continued the study.
The results: pain scores in the virtual reality group tended to be lower than scores in the standard care group, although not significantly. The majority in the virtual reality group said that the glasses helped distract them from the lumbar puncture. Although teens don’t talk much to adults, they told us that the glasses were "neat," "cool," and "fun," and said the experience was like you were "in there" (the video). Nearly all wanted to use the glasses again. Following the completion of the study, we were able to purchase 2 more virtual reality glasses (all are bolted to the cabinets in the treatment rooms) that patients now regularly use during a variety of painful procedures.
Oncology nurses Andrea Windich and Isabelle Sjoberg were inspired by Sander Wint and her colleagues. Currently, they are studying the effects of age-specific distraction techniques on pain, fear, and distress of children and adolescents with cancer undergoing venous port access and venipuncture (A. Windich, I. Sjoberg, D. Eshelman, J. C. Dale, C. E. Guzzetta, unpublished data, May 2004). This study was developed during the research course and has been funded by 3 sources. Patients are randomly assigned to 1 of 2 groups: a standard care group, in which they receive parental presence, an explanation of the procedure, and EMLA; or an experimental group, in which they receive standard care plus distraction. Children in the experimental group who are 5 to 9 years old choose from 1 of 3 distracters: bubbles, an I SPY: Super Challenger book, or the music table. Children 10 to 18 years old choose from the virtual reality glasses, a Game Boy brand computer video game, or the music table. A Game Boy expert (my 16-year-old son) advised us on use of the equipment and appropriate Game Boy games. Data collection for this study is in progress. We built this study on lessons learned from our previous distraction studies and attempted to expand the toolbox with age-specific distraction items. To date, the Game Boy is the most popular distraction item chosen by patients. Game Boys are small, relatively inexpensive, and capture the attention of patients, although researchers may need to consult a Game Boy expert about its use.
Family Presence Initiative
Tapestries tell a story and transform images into reality. In her brilliant address at the 1993 National Teaching Institute and Critical Care Exposition, Marianne Chulay spoke in the powerful voice of the patients, families, and nurses she had encountered during her year as president of AACN. One story told of a clinical nurse specialist who took a wife to her husband’s bedside during cardiopulmonary resuscitation (CPR). My knee-jerk response to the story was intense. What was Marianne thinking? Families are not allowed in a patient’s room during a code! Little did I recognize the golden thread she unwittingly bequeathed to my tapestry.
Less than a year later at Parkland Hospital in Dallas, trauma case manager Theresa Meyers told me about bringing the family to the bedside of a 14-year-old trauma patient during CPR. She explained the mother insisted that she needed to be at her son’s side during resuscitation. Theresa got clearance from the trauma surgeon and brought the family in. What did the parents do? They talked to their son. They coached him to keep fighting for life. And they told him how much they loved him before he died. Things weren’t easy for Theresa after this event. Colleagues criticized her decision. There was talk she might lose her job. One physician vowed that "pigs would fly" before family members were ever allowed to be present again during resuscitation.
Theresa came to me for support, but she also came with a simple question: Why do we do that? Why do we ban families from the bedside during CPR? I had no answer. After all, I now realized, what could be more holistic than facilitating a family’s wholeness, integrity, and dignity during a crisis? Convinced that some families have a strong need to be with their loved ones during resuscitative efforts—and that patients may benefit from their presence—Theresa Meyers and I set out to change accepted practice.
| Most families want to be present during cardiopulmonary resuscitation and to have the chance to be with their loved one just before death if they so desire.
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At some point, all tapestries encounter setbacks: snarls and kinks that tangle or block the work. Sometimes the threads are woven inaccurately, need to be pulled, and the section started again. Such was the case after we developed a "family presence during CPR" program for Parkland’s emergency department. For months, the resistance to implementing the program was extreme. Our colleagues insisted that families who come to our public hospital would not want to be present during CPR. We regrouped and set out to answer the single hypothetical question: Would families who had lost a loved one while in our emergency department have wanted to be at the bedside during CPR if they had been given the option? We brought the answers to the department of trauma and emergency medicine, whose members had challenged us with the question. Of the 25 family members we interviewed by phone, 80% had wanted to be present during CPR, and a remarkable 96% believed that families should be able to be with their loved one just before death if they so desire.27
Naively, we thought we had overcome the major barriers to implementing our family presence program. We were wrong. We encountered more resistance, new snags, and formidable roadblocks. As months passed with no progress, I wondered whether the opponents thought we would get tired and give up. Not us. We just regrouped with a new approach.
If we couldn’t implement a stand-alone family presence program, why not make it an intervention in an experimental study? This backdoor approach to implementation became a turning point in our journey. Even those who strongly opposed family presence agreed to let us investigate the issue. Funding by the American College of Emergency Physicians and the Emergency Nurses Association brought added respectability.
We studied the attitudes, benefits, and problems expressed by families, patients, and healthcare providers involved in family presence during invasive procedures and CPR. Several months into the study, attitudes about family presence began to change as colleagues started to experience family presence rather than worry about it. Unbelievably, even some of the physicians, including the ones who initially were most opposed to the practice, allowed families to be present on a case-by-case basis. The results of this study, which were published,28,29 demonstrate that the benefits of family presence outweighed the problems.
Four remarkable tapestry threads were produced by this study. First, sometime pigs do indeed fly. Second, a written procedure for family presence during invasive procedures and CPR was approved for use throughout Parkland Hospital. Third, numerous articles about our family presence project were published.27–37 And fourth, a series of media blitzes occurred, largely thanks to Dr Diana Mason, editor-in-chief of the American Journal of Nursing (AJN), who was committed to our project and to disseminating the findings to professional and consumer audiences.
From its initial publication in AJN, reports of the study appeared in major newspapers and magazines such as US News & World Report, Newsweek, Red-book, Time, USA Today, The Washington Post, and The New York Times. Findings aired on all major television news stations, reaching an estimated total audience of 8 636000. The study received in-depth coverage on Good Morning America, NBC Dateline, ABC World News Tonight, and CNN. Radio broadcasts across the United States reached more than 10 000 stations. Theresa Meyers and her coinvestigators won multiple awards, including the 2001 Sigma Theta Tau International Research Dissemination to Nursing Award. From these experiences, I also learned much about the way in which journalists can transform a dry, official research title "Family Presence During Invasive Procedures and Resuscitation: The Experiences of Family Members, Nurses, and Physicians," to reach consumers with compelling headlines: "Bedside in the ER,"38 "Emergency Room Should Be a Family Affair,"39 and "Present at Loved One’s Last Moments: Some Hospitals Let Families Stay at CPR."40
Not long after these events, a group of nurses from Children’s Medical Center of Dallas approached me about starting a family presence program for their pediatric emergency department. Our champion, Janice Mangurten, and her family presence team started by surveying the emergency department providers about their level of support for family presence. Of the 109 providers who responded, most supported a formal written policy for family presence during invasive procedures (83%) and CPR (71%).41 Encouraged by this level of support, we took a front-door approach and developed a written family presence policy that was approved by administration. In evaluating the first 54 family presence events, we found the policy was correctly being implemented and caused no interruptions in patients’ care. The process we used to implement this program will be published soon.41 Our next step at Children’s Medical Center was to develop a prospective research investigation to identify the problems and benefits of family presence. This study was developed and funded, and as of this writing, data collection has just been completed (J. Mangurten, J. Owens, L. Vinson, S. H. Scott, J. Sperry, S. Scott, B. Hicks, L. Roy, C. E. Guzzetta, unpublished data, May 2004).
I had now been involved in setting up family presence programs at 2 institutions: one through the back door and the other through the front door. Talking with Diana Mason at AJN, I related my profound sense that the doors to family presence were opening across the country. Because consumers have a powerful influence on changing the healthcare system, the media coverage on family presence was essential in making change happen. But we also were flooded with invitations to speak at conferences and requests for advice in setting up similar programs. I suggested to Dr Mason that perhaps the family presence movement was evolving much like the movement to include fathers in the labor and delivery room. She listened to my musings. (If you know Dr Mason, she is one of those rare visionaries who can see the big picture, understands exactly what needs to be done, and then cleverly talks someone else into doing it.) She pointed out that if doors were indeed opening, we would not know unless we captured the data. She suggested that we survey nurses nationally to identify their family presence practices before the door opened much wider and then, several years later, survey again to determine whether family presence had become more widespread. So that is what we have done.
The study was funded by AACN and the Emergency Nurses Association with Dorrie Fontaine, the current president of AACN, as a strong proponent and coinvestigator. From the nearly 1000 critical care and emergency nurses nationwide who responded to our survey, nearly all (95%) reported having no written family presence policies and most are confronted with requests from family to be present (31% CPR; 61% invasive procedures).42 On the basis of these findings, we recommended that nurses work closely with physicians, healthcare administrators, and their professional organizations to adopt more widespread policies supporting family access during emergency procedures.42 Currently, AACN believes that all critical care units should have a written policy that allows the option of family presence during invasive procedures and CPR.43
But why do we need family presence policies? Formal policies or guidelines prevent a hit-or-miss approach to family presence when providers remember, feel like it, or give in to the forces that prevail at the time. Formal policies represent consensus among an institution’s administrative and clinical leaders to ensure support and sanction of the practice. Policies affirm that a structured plan is in place to legally protect staff before crises occur, and they confer equal consideration for all patients and their families. Formal policies specify who does what, what should and should not be done, and under what circumstances to achieve uninterrupted patient care. Moreover, policies support educational programs for staff and a plan for ongoing research, evaluation, and quality improvement of the practice.41
Following these family presence projects, I was shocked when I next gazed at my evolving tapestry. The warp threads on the loom had become titanium columns and the weft threads crossing them had taken on strength and determination.
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Tapestry Transformation: A Work in Progress |
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TopAbstractMy Tapestry’s OriginsTapestry EvolutionTapestry Transfiguration and...Tapestry Transformation: A Work...References |
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My tapestry continues to be a work in progress. Over time, it has taken on new meaning and purpose. I am clearer in mind and spirit about my life’s work: bringing holism and healing to the center of nursing practice. This work has demanded that I weave the diverse threads of my roles as clinician, mentor, author, and researcher. The merged threads have instilled a more vivid and dynamic awareness about the enormous power of holism and healing within nursing.
All too often we forget that great tapestries are not created in isolation. Truly great tapestries represent the inspiration and collective work of many. Each of us weaves our own body-mind-spirit tapestry that eventually connects with the tapestries of others. This connection is where the magic happens. These interconnected tapestries unleash a proliferative force, a renewable source of energy by which we reaffirm one another’s spirit and transform each other’s work. This transformation radiates because of our interconnectedness. It illuminates because of the boldness of our colors and our voices. Most of all, it dances44 when we are brave enough to contemplate President Dorrie Fontaine’s challenge to "rise above" and envision new perspectives driven by purpose and possibility. It is this reciprocal transformation that represents our shared journey toward wholeness and healing. And I am eternally grateful for this gift.
| AACN believes that all critical care units should have a written policy allowing the option of family presence during invasive procedures and cardiopulmonary resuscitation.
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ACKNOWLEDGMENTS |
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To purchase reprints, contact The InnoVision Group, 101 Columbia, Aliso Viejo, CA 92656. Phone, (800) 809-2273 or (949) 362-2050 (ext 532); fax, (949) 362-2049; e-mail, reprints{at}aacn.org.
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REFERENCES |
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TopAbstractMy Tapestry’s OriginsTapestry EvolutionTapestry Transfiguration and...Tapestry Transformation: A Work...References |
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This article has been cited by other articles:
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  K. G. Mellott, P. B. Sharp, and L. M. Anderson Biobehavioral Measures in a Critical-Care Healing Environment J Holist Nurs, June 1, 2008; 26(2): 128 - 135. [Abstract] [PDF]
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| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
