Compassionate presence: The meaning of hematopoietic stem cell transplant nursing

European Journal of Oncology Nursing 15 (2011) 103e111

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European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon

Compassionate presence: The meaning of hematopoietic stem cell transplant nursing Brenda M. Sabo* Dalhousie University, School of Nursing & Psychosocial Oncology Team, Cancer Care Program, Capital District Health Authority, 5869 University Avenue, Halifax, Nova Scotia B3H 3J5, Canada

a b s t r a c t Keywords: Compassionate presence Hematopoietic stem cell transplant nursing Empathy Compassion Relationships

Purpose: Within oncology, working with patients who are suffering or at end-of-life has been recognized repeatedly as stress-inducing, yet there is little agreement on what specifically nurses may experience as a result of their work. Further, research focused on caring work within the context of hematopoietic stem cell transplant (HSCT) nursing is almost non-existent. In light of the gap, this interpretative phenomenological study focused on enhancing the knowledge and understanding of the effect(s) of nursing work on the psychosocial health and well being of HSCT nurses. Method: An interpretative phenomenological design grounded in the work of Heidegger and van Manen was used to explore nursing work among HSCT nurses. Twelve nurses from three Canadian tertiary healthcare facilities participated in multiple interviews and focus groups. Findings: Thematic analysis resulted in the emergence of four core themes and one overarching novel theme, compassionate presence. The discussion provides an overview of the novel finding, compassionate presence, which challenges the notion that working with individuals who are suffering or at end-of-life inevitably leads to adverse psychosocial effects. Implications for practice, education and research are also provided. Conclusion: Compassionate presence emerged to suggest a potential buffering effect against adverse consequences of HSCT nursing work. This finding underscored the value of the relationship as an integral component of nursing work. Ó 2010 Elsevier Ltd. All rights reserved.

Introduction Research over the past 20 years has identified several potential adverse consequences affecting the health and well being of professionals who provide caring work, including compassion fatigue (Figley, 1995), burnout (Maslach and Leiter, 1997), moral distress (Austin, 2001) and vicarious traumatization (Pearlman and MacIan, 1995). Within oncology, working with patients who are in pain, suffering or at end-of-life has been recognized repeatedly as stress-inducing (Escot et al., 2001), yet there is little agreement on what specifically nurses may experience as a result of their work (Sabo, 2006, 2009). Further, research focused on caring work within the context of hematopoietic stem cell transplant (HSCT) nursing is almost non-existent (Barrett and Yates, 2002; Grundy and Ghazi, 2009). While the initial intent of the study focused on the adverse effect(s) of nursing work on the psychosocial health and well being of HSCT nurses, it became apparent that nurses found

* Tel.: þ1 902 494 3121; fax: þ1 902 494 3487. E-mail address: [email protected]. 1462-3889/$ e see front matter Ó 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.ejon.2010.06.006

caring work to be both rewarding and challenging. The following discussion profiles a de novo finding, compassionate presence which may serve to buffer or offer protection against occupational stress associated with people work (Sabo, 2009). Design, method and analysis Ethics approval was received from the Research Ethics Boards of three Canadian tertiary healthcare facilities and their affiliate academic institutions prior to initiating this study. The study was situated within a qualitative paradigm informed by the interpretative phenomenological stance of Heidegger (2005). Interpretative phenomenology is a specific research design that seeks to understand the human experience. The notion of understanding, of what came be-for (pre-understanding), what is in, and what is behind statements, is at the core of interpretative phenomenology (Heidegger, 2005). To understand what it means to be in the world required an exploration of shared aspects of the life world of HSCT nursing work. This exploration included: (i) how the nurses situated themselves historically and currently, (ii) the nurses’ embodied understanding of HSCT nursing work, (iii) their

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experience of nursing work across time (this is not considered as temporal linearity but a process of movement back and forth from individual to world and back again), and (iv) connections to the taken-for-granted and cultural meaning of HSCT nursing, caring for patients and families, and the work environment. Since the intent of the study was to enhance the knowledge and understanding of the effect(s) of nursing work on the psychosocial health of HSCT nurses, purposive sampling was used to target a specific population considered to have the requisite knowledge and experience about HSCT nursing. Twelve nurses consented to participate in both interviews and focus groups. Study participants ranged in age from 24 years to 50 years with a median age of 29 years. Eleven of the 12 participants had an undergraduate degree in nursing. Years of experience on HSCT units ranged from the minimum requirement of 1 year to 19.5 years with a median of 3 years. The wide range of age and years of nursing experience of the study participants provided multiple perspectives of HSCT nursing work enhancing the understanding of HSCT work. Each nurse participated in two interviews, 6e8 weeks apart, as well as one of two focus groups. Interviews and focus groups involved the use of open-ended questions. In-depth interviews ranged from 45 min to 2 h in length and were audio-taped. Questions consistent with phenomenological inquiry included, but were not limited to: (i) tell me what it is like to provide care/caring for patients and their families on a blood and marrow transplant unit. Tell me everything you can remember including your thoughts, hopes and actions; (ii) if you could describe the experience in a few words, what word(s) would most accurately reflect your experience. The second interview was intended as a member check to ensure trustworthiness of data, analytic categories and interpretation but it became much more. The nurses used the second interview as a mechanism to continue sharing their experiences of HSCT nursing work following reflection from the first interview. The intent of the focus groups were three-fold: (i) serve as a member check regarding early findings from the interviews (based on the writings of Sandelowski (2002)), (ii) discuss the experience of HSCT work further in order to fill in any potential gaps in the findings, and (iii) determine what participants would like to see occur with the findings by way of dissemination and next steps. Thematic analysis based on the work of van Manen (1997) and Benner (1994) was used to bring to light the core themes from the narratives. As analysis evolved, similarities across individual experiences emerged culminating in the final themes. Research findings The nature and meaning of HSCT nursing work was reflected in four core themes: bearing witness to suffering, navigating uncertainty, the need to feel supported, and comfortable in one’s own skin and one overarching theme, compassionate presence. While only compassionate presence will be discussed in depth, a brief overview of the definition of care and caring used for the study, as well as each of the four core themes will facilitate an understanding of how compassionate presence emerged (Fig. 1). Care and caring within hematopoietic stem cell transplant nursing The terms care and caring are frequently used interchangeably, in part because of the continued ambiguity related to their definitions (Paulson, 2004). Various definitions of caring exist within the research literature with little consensus (Finfgeld-Connett, 2007; Sherwood, 1997). For the purpose of this study, caring was defined as “a context specific interpersonal process that is characterized by expert nursing practice, interpersonal sensitivity and intimate relationships” (Finfgeld-Connett, 2007; p. 202). As such,

emphasis is placed on the relationship and qualities such as compassion, empathy and knowledge. In contrast, care was defined as a state or mode of being where emotion, thought and action come together for the purpose of alleviating pain, suffering or the promotion of health and well being in an objective and professional manner (Bassett, 2002; Paulson, 2004; Stockdale and Warelow, 2000). Although the subjective nature within care cannot be excluded entirely, emphasis was placed on objectivity. The relationship existed more as a service rather than connection or ‘presence’. In other words, emphasis is placed on fulfilling the task rather than on the relationship and connection. In the act of caring, space opened for the nurses to connect and be fully present with patients and families. When connection was not achieved, the HSCT nurses saw their work as less meaningful, ineffective and not reflective of the nursing ideal. In these moments of diminished caring the nurses placed emphasis on care rather than caring. Shifting the focus onto care may have been a mechanism to reconcile what they perceived as a lack of caring while affording some sense of value and purpose for their work. Alternatively, an emphasis on care rather than caring may temporarily ease the emotional pain and suffering experienced by these nurses. Ultimately, care came to reflect the tasks within their practice. For example, HSCT nurses talked about providing pain relief and symptom management. While it was important to meet these basic needs, many of the nurses in the study found care without caring to be less fulfilling. You spend a lot of time in a patient’s room. You are always popping in and out to make sure they don’t need anything or they are okay. When you don’t make a connection with somebody you feel a bit reluctant to go into their room. I don’t like that feeling because I would like to feel like I look forward to seeing my patients. I would like them to look forward to seeing me as well. In this example, the nurse highlights how disconnection may lead to avoidance. Without connection, the quality of caring and nursing work decreased. Over time, repeated failure to connect may lead to increased stress. Alternatively, placing emphasis on care rather than caring and the use of avoidance or distance may be necessary to reduce stress. Bearing witness to suffering For HSCT nurses, a significant part of their practice focused on the alleviation of suffering resulting from hematological cancer and its associated treatment interventions. While suffering may be heightened by a diagnosis of cancer, suffering cannot be taken out of the context of the individual’s total experience. It was not uncommon for the study participants to talk about cancer patients’ (and their families’) efforts to understand, to overcome, and to create meaning from the experience. When HSCT nurses attempted to ease the suffering of patients and families, they too sought to understand and make meaning of the experience. In caring for their patients, nurses became privy to, and shared in, the suffering of another. Understanding suffering became a co-created process between HSCT nurses and their patients. .he was going into respiratory arrest and it was difficult to keep his ‘sats’ [O2 saturation] up above 80. The doctor went in and I was standing beside his wife. She grabbed my hand and she squeezed so tight it hurt. She kept whispering to me, “don’t let him [doctor] do that to him, don’t let him say that to him” because the doctor said, “you are going to die and we can’t take you to ICU, so you are going to die here”. It was said in a way that was very blunt, very straightforward, and matter-of-fact. I felt so helpless. At that point he [patient] looked at me and said “you heard him” and he

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Fig. 1. The nature and meaning of HSCT nursing.

pulled off the oxygen off his face and then he said “well I won’t’ need that anymore.” I went out of the room and balled my eyes out. I just felt so helpless. I just felt pain for him, his wife. In this example we not only see how witnessing suffering profoundly affected the nurse, but perhaps more poignantly, we see its effect on the suffering for the patient and spouse. As the patient and his wife heard the devastating news delivered in a cold, detached manner, any hope that may have existed was shattered e futility and despair emerged stripping away what little semblance of control may have been present. Suffering extended beyond physical pain to encompass a loss of hope and increased futility. In situations where both patient/family and nurse were able to maintain hope in the presence of suffering, its impact was lessened even though death was the final outcome. Hope appeared to provide strength to continue, to shape the transition to end-of-life in a meaningful way. The following quote

from one of the nurses demonstrates how a compassionate approach coupled with presence may support hope and reduce the overwhelming nature of suffering. I feel hopeful if there is a chance for change or something or a positive outcome. I guess that could take any form. It doesn’t have to be about being miraculously cured. It can be that death is not so abrasive.creating an atmosphere that is positive. Hope becomes the little things, of seeking out and finding meaning in the small moments of change. For nurses who enter into relationships, connect and become fully present with a patient, a greater understanding of what is meaningful emerges. They are better positioned to facilitate, support and maintain hope even in the presence of suffering or at end-of-life. In contrast, when hope is stripped away, the nurse’s perception of compassion, caring and effective quality of care diminishes which may lead to feelings of hopelessness and the risk for emotional distress.

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Navigating uncertainty While not all care and/or relationships require connection, for HSCT nurses the shared moments between nurses, patients and families through relational connection enhanced their understanding and ability to provide patient-centered care, and facilitated the co-creation of meaning out of the hematological cancer experience. Further, the conversations within these relationships ranged from complex, value-laden decision-making issues (e.g., euthanasia or the futility of continuation of invasive treatment) to simply sharing a quiet moment with a dying patient. The complexity of HSCT nursing practice placed nurses in a position of uncertainty about what was right or best to do. In turn, uncertainty influenced the nature of the relationship and the nurses’ perceptions of the quality of their caring. In the following example we see how the nurse struggled to not only pick up the pieces but comprehend what the patient was thinking and feeling. .the doctors come in and they leave. You are left to further explain that they can’t do anymore and I find that hard. You have to pick up the pieces and they [patients] are looking at you as if you have all the answers and you don’t have them.It is hard because we don’t know what to say, don’t have the answers. I stand there and [in my mind] say “okay, well what now?” Uncertainty also existed within the nurseepatientefamily encounter. Relationships involved an investment of self, a coming together to create meaning from an experience of uncertainty. .although she is a little younger than I am, with young children and because she has spent so much time on our ward I find I am having trouble leaving that behind when I go home. I think part of the reason is that I have become friends with this woman. [They are like] people you meet in the community, someone I would be friends with, spend time with, were I not in a professional situation. HSCT nurses became entangled in the lives of their patients and families in their desire to make a difference, to help, and to care. Uncertainty was situated in the relationship, the ethical moments of day-to-day nursing and the connections these relationships evoked. Uncertainty could be found in the struggle to maintain a balance between the professional and personal. The need to feel supported The nurses in this study talked about the challenges of working on HSCT units which often led to feelings of stress and/or frustration. They reported issues that included management/leadership concerns (not being listened too, lack of validation), workload (insufficient time to attend to psychosocial emotional needs of patients), conflict with colleagues (e.g., bullying, gossiping) or other healthcare professionals (e.g., philosophical differences such as cure vs. care, biomedical vs. nursing models), lack of resource supports such as grief counselling and debriefing, and limited or no access to continuing education (particularly around transitioning to end-of-life care). The nurses wanted to feel supported, that their work meant something outside that of other nurses and the patients and families they cared for. In the following example, the HSCT nurse spoke of being heard and supported by colleagues through shared understanding. .I knew that I could speak to two people and they would listen. Listening was very important, and reassuring. Knowing that people know who I am as you present yourself at work and know my practice; to say that “you know.” It was listening that was most important and knowing that people would sit down and really listen to what I was feeling or expressing. That was important to me and I felt supported

The need to have one’s feelings acknowledged and validated as normal was a large part of feeling supported as was affirmation that the caring work was meaningful. It helped the nurses to maintain a sense of equilibrium, particularly when it felt like their worlds were turning upside down through the loss of a patient or a negative, tense work environment. When the nurses in this study perceived they were heard, feelings of isolation were minimized, and their experience normalized. Support from colleagues, although desirable and welcome, was not enough. HSCT nurses identified a need for support from management/leadership in the form of acknowledgement, validation and praise. In contrast to the previous example, the nurse in this next quote was left feeling de-valued, her concerns largely unheard or minimized. .I don’t need them to understand but I need them to listen. If I am competent enough to do all the things I do and things seem to be successful because our patients are coming and going and I am not getting reports of poor care, then I just wish they would listen and take me as a competent educated person who can articulate the things that we feel we need and why.I just feel sometimes people aren’t listening. Management appeared to be disconnected from the concerns of the nurses. The lack of acknowledgment and failure to ‘hear’ or ‘listen to’ the nurses may be reflective of a larger systemic problem reflected in the organizational disconnection between job expectation (organizational belief that the nurse’s role is the delivery of care/caring) and contribution of the nurse (professional belief that one’s role extends beyond direct patient and family care). Although HSCT nurses in this study were deemed competent to provide care to critically ill patients, their contribution to unit and clinical practice changes fell on deaf ears. The lack of congruity between clinical competence, education and knowledge about the practice environment reinforced perceptions of limited value and control in relation to their work leading to the potential for increased stress. In contrast, job satisfaction increases when individuals feel valued, have autonomy and control over their work or practice. Comfortable in one’s own skin During the interviews nurses were asked to describe what ideal nursing looked like within the context of hematological cancer care. For HSCT nurses, the cornerstone of their work was caring. Regardless of the years of clinical practice, a shift to caring for hematological cancer patients and their families required a steep learning curve whether the nurse was experienced or novice. Baseline nursing knowledge, fundamental to all practice was insufficient. New skills and knowledge were required. When I first started on the ward I had terrible anxiety every single shift. It was really awful and that lasted a good six months. It was just simply because there was so much to learn. Then I started to get comfortable.Even now there is so much reading to do; there are new treatments. Articles are always being written and just keeping up is a challenge. HSCT nurses did not perceive their practice as a static one but one that necessitated personal and professional growth and development in an effort to enhance quality patient care and personal satisfaction. HSCT nursing was also about self-awareness. This meant the need to push one’s self beyond what felt comfortable. In stepping outside their personal comfort zone HSCT nurses were able to recognize personal and professional areas for growth. HSCT nursing practice stemmed from a sense of coherence and congruence between personal and professional values and beliefs.

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.I find that just picking up on if a patient is feeling down on a certain day or they just had bad news or good news; just being able to share those emotions with them. I find that sometimes instead of letting the patient talk about how they are feeling about something we move on to something else and get their mind off it. One of the challenges within nursing practice was a reluctance to go where patients would take them. To do so meant shifting away from the nurse’s comfort zone and taking risks. Stories of pain and suffering carry the potential for emotional distress. At the same time, a failure to acknowledge and support the stories of suffering does little to address personal discomfort and may stunt personal/ professional growth. When the nurse recognizes that it is about letting the patient guide the conversation rather than the nurse redirecting the conversation to something safe or comfortable, the nurse opens her/him self up to richer experiences, and challenges existing values and beliefs. As a result greater coherence and congruence between personal and professional values may be achieved. Further, the nurse begins to grow as an individual potentially becoming more comfortable with who she/he is as a nurse. Compassionate presence and the hematopoietic stem cell transplant nurse The notion of presence was used by all but one of the nurses in talking about relational connections with patients and families. It reflected a characteristic of caring within HSCT nursing. Presence has been considered a component of several nursing frameworks from Human Science and Human Caring (Watson, 1985) to Human Becoming (Parse, 1998). A meta-synthesis of the concept of presence concluded that presence is “an interpersonal process that is characterized by sensitivity, holism, intimacy, vulnerability and adaptation to unique circumstances. It results in enhanced mental well being for nurses and patients.” (Finfgeld-Connett, 2006, p. 710). When presence is considered within the context of caring, it suggests a moral ethical component, “a way of holding intentionality” (Covington, 2003, p. 301). To be present requires intent to act on the part of the nurse. Further, when the nurse is fully present, it reflects the caring nature of that individual, a willingness to share in their pain and suffering. When presence is coupled with compassion, such as in the finding, compassionate presence, the nurse not only seeks to act to alleviate pain and suffering in another, but does so within the context of heightened awareness of suffering of humankind. Further, compassion and presence imply that the caring act is freely given. Although the specialized knowledge and expertise of HSCT nurses was a necessary component in attending to the needs of hematological cancer patients and their families, their practice did not end there. HSCT nurses were providers of holistic compassionate care; their actions transcended the task (care) to include how the task was carried out (caring reflected in attitude and approach). This finding is consistent with that of other research studies that have explored caring work among nurses (von Dietze and Orb, 2000). For HSCT nurses, compassionate care involved being present and connected within the ethical moments that made up relationships. It meant taking risks, being vulnerable. Research suggests that compassionate care is more than just “knowing about suffering and pain of others. It [is], in some way, knowing that pain, entering into it, sharing it” (Fox, 1990, p. 21). Defining compassion and empathy To understand what was meant by compassionate presence, one must first understand the terms compassion and empathy.

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Compassion has its roots in the Latin e com (come together) and pati (to suffer), literally to suffer with. Its usage dates back to the 14th century. Compassion has been defined as “a way of living born out of an awareness of one’s relationship to all living creatures. It engenders a response of participation in the experience of another’s sensitivity to the pain and brokenness of the other and quality of presence that allows one to share with and make room for the other” (Roach, 2002, p. 50) Thought of as a defining component of nursing, compassion is frequently described as an emotion such as the experience of feeling with another while recognizing that the feelings of one are not the same as the other. The affective quality of compassion suggests that it exists in the lives of individuals not just in the moment but across time influencing our perceptions, actions and desires (Oakley, 1992). In effect, compassion is not static, but evolves as the individual’s repertoire of experiences informing understanding and meaning grows. Although compassion may contain or require emotion it is not limited to emotion. Compassion includes a rational dimension e an altruistic participation in another’s suffering, principally intentionality. This was reflected in the HSCT nurses’ willingness to not only enter into and share the suffering of their patients and families, as reflected in the theme bearing witness to suffering, but to act to lessen or alleviate suffering. On the one hand you understand why they [doctors] are doing it but sometimes you just can’t accept it. You see the suffering. I remember when I first started nursing; I asked one of the staff men responsible, because it was understood that this young boy was dying and there was nothing that could be done except give him supportive treatment. I remember saying to him, “if we know this is the eventual outcome, why are we not just keeping him comfortable. Why are we not just helping him to enjoy what is left of his life with his family?” In this example, the HSCT nurse interpreted further active treatment as futile and increasing the suffering of the young patient. While one might suggest that advocating for a change in treatment approach is fundamental to nursing practice, her desire to ease suffering may also be considered a reflection of compassionate presence. Implicit within the notion of action is a moral dimension, relating to the needs of another and reaching beyond self-interest. This necessitates both understanding and rational thought, not just emotion (Bergum and Dossetor, 2005). True compassion requires us to transcend traditional boundaries and distinctions (Nouwen et al., 1982). Nouwen et al. (1982) suggest that compassion is not simply about responding to the feelings of those who are suffering but about a sense of ‘solidarity’ with, a willingness to enter into the problem with another that is at the core of compassion and compassionate care. Building on the idea of solidarity, compassion moves beyond what the nurse does for the patient to become what the nurse and patient choose to do together. Compassion thus becomes more than the nurse conveying an understanding of the patient’s suffering and the patient acknowledging that understanding. Nor should compassion be thought of as the nurse’s capacity to suffer with the patient. “To stand with others is to work actively to eliminate that misery, not to arrange one’s life so as to share it” (Bartky, 1997, p. 182). Compassion strives for and supports a balance between standing with and working toward the elimination of suffering without taking that suffering on as our own. [Patients will say], “don’t let me die”, “don’t let them torture me” or “don’t let them do that to me.” We talk a lot about the patients dying and wishing that they would die. People wouldn’t understand that, you know. We have said it a lot, “God just needs to let this end, take him, let him go out of this misery.”

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In this example, the nurse highlighted how her desire to alleviate suffering moved her beyond simply understanding suffering to acting on that suffering in concert with the patient whether on a physical, emotional or spiritual level. At first blush, the words, ‘God needs to let this end’ may reflect paternalism, the nurse as possessing the knowledge of what is best for the patient. To act with compassion is not about the nurse as knowing what is right or good, but about a gift to the patient e the easing of suffering. In contrast, empathy, derived from the Greek empatheia, em (to put into or to bring about) and patheia (suffering) suggests a bringing about or understanding of a certain condition or state. A relatively recent term, empathy has its roots in psychology and aspects of the therapeutic process (Rogers, 1958), specifically the “affective cognitive experience of understanding another person” (Olsen, 1991, p. 65). Rogers defined empathy as “the ability to sense the client’s private world as if it were your own, but without ever losing the ‘as if’ quality” (Rogers, 1957, p. 99). Empathy is seen as an important aspect of therapeutic interactions. While empathy is an experience, it requires the nurse to ‘objectify’ that experience; that is, “empathy is a means of cognitively understanding another’s experiences” (von Dietze and Orb, 2000, p. 167). Empathy may be thought of as a mechanism of observation to facilitate understanding but its presence does not imply good care or compassion; only that its presence is necessary for appropriate care to take place (Olsen, 1991). .[Nurses] end up ‘resenting’ that person taking up a bed for a person waiting for a transplant because it is palliative [care] and we are active treatment unit. They could be here 2e3 weeks and then you have a ward full of people needing transplants. The HSCT nurse in this example highlights how the presence of empathy and understanding does not necessarily equate to compassion and caring. While on the one hand, the nurse may understand a dying HSCT patient’s desire to remain on the unit, it remains in sharp contrast to the overall focus for the unit, curative intent. At the same time, the nurse’s level of discomfort over caring for a dying patient shifts the burden of suffering from the patient to nurse with her/his desire to ease their personal suffering rather than that of the patient. Compassion infers an awareness of and need to act on the suffering of another regardless of one’s own suffering. Empathy, while acknowledging an understanding of the suffering of another, does not impel the nurse to act on that suffering; it may, in fact, push the nurse to distance herself from the pain of loss as in the case of the palliative HSCT patient on an active treatment unit. Instead, compassionate presentce may support the nurse’s capacity to challenge the human tendency to distance one’s self from exposure to suffering and its vulnerability (Johnston, 2007). Theorists have attempted to conceptualize empathy in five ways. The first postulates that empathy is an innate, natural ability that cannot be taught; rather, it can be identified, reinforced or refined (Alligood, 1992). Empathy has also been described as a professional state. In this depiction, the primary influencing domains are cognition and behaviour (Morse et al., 1992). The nurse cognitively selects the best response which suggests some objectivity and self-awareness. Empathy has also been conceptualized as a communication process where the nurse perceives the patient’s emotion or situation, expresses an understanding, conveys this understanding to the patient and the patient reciprocates by acknowledging this understanding (La Monica, 1981). The final two conceptualizations have received less attention. The first views empathy as caring, wherein the nurse feels compelled to act as a result of perceived understanding (Sutherland, 1995). The second suggests empathy is a special relationship (Raudonis, 1993). In this instance a special bond or friendship develops through a “process

of reciprocal sharing and revealing of personhood within the context of caring and acceptance” (Kunyk and Olson, 2001, p. 323) (Table 1). In van der Cingel’s philosophical discussion of compassion and professional care, she stated that “almost all philosophers describe suffering as a condition to compassion” (van der Cingel, 2009, p. 125). Further, the author goes on to suggest that empathy is a precondition to compassion but that compassion is not a pre-condition for empathy. Empathy is “the glue that establishes, hooks and promotes the relationship” (Walker and Alligood, 2001, p. 145), whereas compassion moves the nurse beyond understanding “to make a choice to acknowledge the suffering of others” (van der Cingel, 2009, p. 134) and act on that suffering to lessen or ameliorate suffering. Further, compassion offers comfort by virtue of making suffering visible, of giving it a voice thus letting the sufferer know that she/he is not alone. While empathy facilitates an understanding of an emotion or experience it appears to stop short of giving voice to the suffering of the other.

Defining compassionate presence Presence encompasses far more than the affective domain, ranging from the physical to the transcendent, from the psychological to the relational (Covington, 2003). It is frequently considered a defining quality within the nurseepatient relationship (Gilje, 1992; Rogers, 1996). True presence allows the nurse to witness and understand the suffering of a patient. Together, compassion and presence provide a more robust picture of the essence of nursing practice within the context of the relationship by embracing both care (the what) and caring (the how, e.g., attitude), as well as cognitive, affective and spiritual domains. For HSCT nurses in this study, to be compassionately present meant nurses shared in the patient and family’s experience of pain and sorrow and its associated effects. In so doing, the nurse experienced a greater sense of fulfillment and enlightenment, even in the presence of pain and suffering. It became an opportunity for personal growth and enhancement of nursing practice. For the nurses, empathy and connection (which extends beyond engagement) were positive attributes of compassionate presence and enhanced caring work. HSCT nurses’ experiences in this study contrasted sharply with the findings of trauma researchers who have suggested that repeated engagement with suffering individuals inevitably leads to emotional distress in the form of compassion fatigue or vicarious traumatization (Figley, 1995; Pearlman and MacIan, 1995). In my estimation, such thinking, while reasonable, may not be entirely accurate for two reasons. The majority of studies focused on adverse effects rather than: (i) exploring the nature of trauma work in general e that is both benefits and costs; (ii) clearly differentiating whether it is the suffering of another or characteristics of the care provider (e.g., compassion, rescuer syndrome) that are critical factors in the risk of adverse consequences, and; (iii) identifying factors that may ameliorate or buffer adverse consequences such as compassionate presence. Second, in taking a quantitative approach through the use of screening tools for adverse effects, the meaning of trauma may not be fully captured. Answers are reduced to black and white, decontextualized and disembodied. Listening to and sharing in the stories of suffering and pain carry the potential for emotional distress yet they also provide opportunities for growth, emotional insight and reward. Just to have the privilege of being involved with a family when they are in a situation like that [family member requiring HSCT for a life threatening hematological cancer] and being able to see how the

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Table 1 Comparison of compassion and empathy. Compassion (van der Cingel, 2009; von Dietze and Orb, 2000)  Pre-conditions include identification, empathy and imagination; distance e distinguish self from other; professional distance and closeness  Inextricably linked with action and moral virtue (how the action is carried out e attitude and approach, values, wanting the best for another)  Revolves around the way we relate to others and demands we act (altruistic). Place the interests of the sufferer before our own  Connected to phenomenon of suffering  Comprised of affect, cognition and moral compass. To feel emotion requires a thought (e.g., witnessing suffering will not produce emotion unless individual thinks suffering is terrible)  Moves us toward wholeness by recognizing our own humanity and that of others e not about sentiment but about solidarity, about mobilizing hope, confidence and trust, between patient and nurse  Volitional aspect e deliberate process of making a decision  Renders suffering visible by acknowledging its existence  Offers comfort by acknowledging that something is lost (e.g., health)  Embedded in relationship that is unequal but includes mutual worth

dynamics of that family works, to be involved in the story of the family is very rewarding. When little is known about a phenomenon, limiting the exploration to survey questions or screening tools alone may constrain our understanding through prescriptive boundaries. While not necessarily inaccurate, the results may provide a narrow reflection of the experience and nature of nursing work. HSCT nurses spoke of caring work as challenging and emotionally distressing but it was also perceived as a privilege and reward. The positive aspects gained through the relationship with patients and families offset the distressing elements. What I interpreted as compassionate presence offered HSCT nurses a window into life and hope across the cancer continuum and minimized emotional distress in the face of suffering and uncertainty. Compassionate presence is defined as a way of being and connecting which requires the nurse to be authentic/genuine, open and available to share in the ethical-moral moments of their patients and families. It is a reflection of holistic nursing practice embracing the physical, psychological, emotional and spiritual domains. Compassionate presence is not innate; a state achieved simply by donning the nursing uniform. Rather, it is continually evolving, emerging out of the nurse’s personal and professional growth. While education may provide building blocks, the quality cannot be solely attributed to academic learning. Compassionate presence is lived e that is, the nurse must experience those moments of shared suffering, integrate them, and redefine their practice. Further, a nurse exemplifying compassionate presence needed to remain vigilant about whose pain and suffering was being shared. A failure to establish clear boundaries between the personal and professional could place the nurse at risk for adverse effects. When HSCT nurses over-identified with their patients and families, they found it difficult to let go, to make the transition to end of-life-care; the emotional pain associated with the subsequent death of the patient intensified. There are people that you are with so often you know what is going on and all about their families. They know all about yours. It is hard not to get entangled with all of that and then to get emotionally involved with some of them. It is not like your best friend but it is like someone you were close to, so when they die it is hard.

Empathy (Alligood, 1992; Kunyk and Olson, 2001; La Monica, 1981; Olsen, 1991)  Considered a pre-condition for a therapeutic intervention e involves a component of objectivity in order to understand  Distinct from compassion  Occurs when one experiences a commonality (feeling, experience, situation, or unnamed something) with another. Involves a mutuality with another around the commonality  Ability to recognize the humanity of another influences degree of empathy  Generally involves affect and cognition e where the individual places emphasis influences the ‘essence’ of empathy  Expression of empathy may be influenced by personality, physical condition, stress experienced and internal conscious and unconscious criteria upon which similarity is perceived  Basis of empathy is limited by the boundaries of the shared feelings e the other’s emotions and/or situation must make sense or be justified by the event for the individual to express empathy  Notion of humanity influences moral dimension and whether or not action occurs  Lack of consensus-based definition and mature theoretical foundation

HSCT nurses talked about distancing themselves from their patients as a self-protective mechanism e the pain associated with loss lessened. Yet, in distancing themselves from their patients, they felt less fulfilled as nurses. I can think of a family I just didn’t connect with. The hardest part was that this woman died on my shift. I really didn’t have a relationship with her. I tried to do everything I could to connect with the family but it never really worked that way and it was such an emotional day. After the patient died I took a ‘stand back’ approach and let them do their thing. I really didn’t feel that I had much of an impact at all. Further, research suggests that distancing or disengagement may increase the risk for experiencing adverse effects such as compassion fatigue, burnout, vicarious traumatization and moral distress (Storch et al., 2004). Rather than witnessing suffering, it would appear that distancing and disengagement are critical to the onset of adverse psychological consequences. In a study exploring caring work among palliative care nurses in the acute care setting, researchers identified 3 core strategies supporting ‘emotional survival’: emotional shielding, emotional processing and emotional postponing (Sandgren et al., 2006). Emotional survival provided a mechanism for nurses to manage emotional overload in their professional and personal lives. Professional shielding facilitated the nurses’ psychosocial health by striking a balance between distance and involvement in the relationship. Emotional processing was a form of coping which facilitated the nurses’ ability to maintain their professional shield. When nurses had a low degree of emotional competence (knowledge, experience, values and attitudes) and self-awareness, they put off processing the emotions (emotional postponement) arising from their interactions with patients and families. Although the study supports several aspects of compassionate presence (e.g., the need to clearly delineate professional-personal boundaries, ensure selfawareness, and ongoing professional growth through experience), two significant differences exist between the two ideas. Where compassionate presence reflects the notion of ‘being with’, a living out of the caring nature of HSCT nursing through connections and relationships, emotional survival generally attends to strategies or methods to address a problem, in essence, ‘avoid being with’. Second, compassionate presence conveys a positive tone, where

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connection or relationships carry benefits. Emotional survival suggests that caring may lead to negative effects but if a nurse employs certain strategies she/he may postpone the onset. This interpretation does not suggest that the potential risk for psychological/emotional pain as a result of caring relationships is nonexistent if one is compassionately present; rather, it suggests that caring should be perceived as a double-edged sword. If the nurse is compassionately present the potential for adverse psychosocial effects may be reduced. Study limitations Critical to understanding the nature and meaning of caring work among HSCT nurses was the need to take an exploratory approach that supported an understanding of the experience and its meaning given the limited information about the nature of caring work in this specialty group of nurses. To that end, purposive sampling was used as a method. Such an approach may have reduced the level of diversity of participants. Although the study was open to both male and female HSCT nurses no males came forward to participate. The insight gained from a male perspective would have enhanced the overall understanding and meaning of HSCT nursing. In particular, their voices could have been instrumental in shedding additional light on whether the meaning of caring work among HSCT nurses was gender or disciplinerelated. Additionally, while no restrictions were put in place to limit nurses from diverse cultural and/or religious groups, participants were largely Caucasian Christian nurses. Although the selected methodology facilitated the emergence of both rich descriptions and interpretations through an in-depth exploration of the nature and meaning of caring work for HSCT nurses the tight focus of the research, multiple data collection approaches and the homogenous nature of the sample population reduced the overall number of participants required for the study (Morse, 2000). Since interpretative phenomenology seeks to understand a phenomenon of interest, emphasis was placed on gaining a deeper knowledge of individual experiences, shared meanings and differences in perspectives, rather than providing theory for generalization or prediction of phenomena. Questions remain concerning whether other nursing specialties and healthcare disciplines would identify similar or different meanings of caring work. Further, research is needed to understand the connections across all of the themes and between individual themes. Finally, as a researcher engaging in interpretative phenomenological research, the notion of self and its influence must be acknowledged (van Manen, 1997). This approach does not require the researcher to ‘bracket’ her/his own preconceptions, notions or theories during the interpretative process (Lowes and Prows, 2001). Although every effort was made to ensure that the voices of the nurses resonated throughout the findings, the subjective experience of the author’s prior work as an HSCT nurse had the potential to influence the process of interpretation.

ideal nursing, the reality of nursing practice and the work environment, as well as fostering competence in compassionate presence. Additionally, resources and supports that promote the integration of self-awareness into practice may help HSCT nurses to accept limits (including those of personal vulnerability, range of personal influence, responsibility for change, and limits of the known and unknown) and maintain clarity about self in relation to others, both in terms of interconnections and boundaries (Harrison and Westwood, 2009, p. 209). Mentorship and supervisory programs that facilitate the development of skills that acknowledge and build on existing strengths may be beneficial for HSCT nurses given the strong relational component to their practice. The notion of leading by example, modeled in mentors has the potential to support change. Mentoring enhances the development of expert nurses combining competent clinical practice with increased capacity to enter into, support and sustain healing relationships with patients and families (Johnson et al., 1994). In light of the paucity of research studies, there remains a limited knowledge and understanding of caring work among HSCT nurses. Research designs need to embrace approaches that support the emergence of meaning and understanding of HSCT nursing experience. Integration of both qualitative and quantitative study designs may be helpful in expanding current knowledge about the nature of HSCT nursing. Initially, research should continue to focus on this subspecialty nursing practice to gain a greater understanding of the nature of their work, as well as the benefits and challenges. Further, such approaches may lead to the development of theories and models clearly articulating the role of relationships and connection in ameliorating adverse effects of caring work in light of the de novo finding of compassionate presence. Finally, further research is needed to more clearly articulate the conceptualizations of compassion and empathy, the similarities, differences and areas of overlap as they relate to nursing practice. Conclusion While HSCT nurses experienced negative effects they were not necessarily traumatizing. This was highlighted in the novel finding, compassionate presence. Connections, empathy and caring did not inevitably leave the HSCT nurse experiencing occupational stress. Rather, compassionate presence emerged to suggest a potential buffering effect against adverse consequences. This underscores the value of the relationship as an integral component of nursing work. Leadership within healthcare must come to recognize, acknowledge and support the inherent value of connection and empathy, reflected in compassionate presence, as an integral dynamic quality of nursing practice before positive change and a healing environment may begin to occur. Finally, the results from this study suggest the need for more research to enhance our understanding of how and in what way the relationship among nurses, patients and their families serves to enhance overall psychological health rather than lead to adverse consequences.

Implications for nursing practice, education and research Conflict of interest Findings from this research underscore the value of the nurseepatientefamily relationship within nursing practice when it is enacted in an open, authentic, holistic manner. When nurses feel supported, their work acknowledged and valued, there is alignment between the ideal of nursing practice and the reality of nursing practice. Further, compassionate presence builds on the fundamental principles of nursing education and clinical practice e caring and the therapeutic relationship. The need for ongoing education, clinical supervision and mentorship may be useful in increasing the alignment between HSCT nurses’ perceptions of

The author declares no conflict of interest. Acknowledgement The author would like to thank the nurses who so willingly gave of their time to participate in this study. Funding for this study was provided by the following granting agencies: Nova Scotia Health Research Foundation, Nursing Research & Development Fund Dalhousie University & Nurses Helping Nurses (CDHA).

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