Nursing Pain Management—A Qualitative Interview Study of Patients with Pain, Hospitalized for Cancer Treatment

Nursing Pain Management—A Qualitative Interview Study of Patients with Pain, Hospitalized for Cancer Treatment

Original Article Nursing Pain Management—A Qualitative Interview Study of Patients with Pain, Hospitalized for Cancer Treatment yyy Tone Rustøen, RN, ...

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Original Article Nursing Pain Management—A Qualitative Interview Study of Patients with Pain, Hospitalized for Cancer Treatment yyy Tone Rustøen, RN, PhD,* ,† Torill Gaardsrud, RN,‡ Marit Leegaard, RN, MS,† and Astrid K. Wahl, RN, PhD* ,§

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From the *Center for Shared Decision Making and Nursing Research, Rikshospitalet University Hospital; †Oslo University College; ‡ Pain Clinic, Cancer Clinic Radiumhospitalet, Rikshospitalet University Hospital; and §Section of Health Science, Medical Faculty, University of Oslo, Oslo, Norway Address correspondence to Professor Tone Rustøen, Center for Shared Decision Making and Nursing Research, Rikshospitalet University Hospital, N-0027 Oslo, Norway. E-mail: [email protected]. Received March 29, 2008; Revised September 6, 2008; Accepted September 23, 2008. 1524-9042/$36.00 © 2009 by the American Society for Pain Management Nursing doi:10.1016/j.pmn.2008.09.003

ABSTRACT:

Pain is a significant symptom in cancer patients. Understanding of patients’ experiences in relation to pain management is important in evidence-based nursing in the field of pain. The aim of this study was to explore cancer patients’ experiences of nursing pain management during hospitalization for cancer treatment. Eighteen cancer patients participated in the study, all with advanced cancer, including skeleton metastases. The female participants all had breast cancer, and the male participants all had prostate cancer. Data were collected by indepth interviews, and qualitative description was used to entail lowinference interpretation to reach an understanding of the essence of pain and nursing pain management. Patients found it somewhat difficult to express their expectations of nursing pain management and competencies. However, 1) being present and supportive; 2) giving information and sharing knowledge; 3) taking care of medication; and 4) recognizing the pain emerged as themes in nursing pain management. Although patients believed that nurses were caring persons, they perceived differences between nurses in the ways they handled pain management. Furthermore, some patients experienced a lack of information from nurses in relation to pain management. Although cancer patients’ experiences showed the importance of nurses in pain management, it seems that nurses should have a clearer role in cancer pain management in relation to counseling and patient education. The results from this study can increase nurses’ awareness of their role in pain management as a first step in improving pain management for patients. © 2009 by the American Society for Pain Management Nursing

Pain Management Nursing, Vol 10, No 1 (March), 2009: pp 48-55

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Unrelieved pain is a significant clinical problem, and the experience of pain is described as a dreadful reminder of the presence of cancer and the uncertainty of the future (Larsson & Wijk, 2007). In recent population-based studies of pain in cancer patients, its prevalence was found to be from 52% to 60% in inpatients (Holtan et al., 2007; Rustøen, Fossá, Skarstein, & Moum, 2003) and from 21% to 55% in outpatients (Valeberg, et al., 2007; van den Beuken-van Everdingen et al., 2007). Pain intensity was found to be moderate to severe. The presence of metastases and occurrence of breakthrough pain was associated with higher pain scores (Holtan, et al., 2007), and the prevalence of pain was 75% in patients for whom treatment was no longer feasible (van den Beuken-van Everdingen, et al., 2007). This emphasizes that pain is a significant problem, especially in patients with severe disease, and that neither outpatients nor hospitalized cancer patients receive optimal pain management and care. There are many factors contributing to the lack of pain management in these patients, in the health care system, in health professions, and in patients themselves (Miaskowski, 2000; Sun, et al., 2007; Valeberg, et al., 2007). Nurses have a key role in pain management with hospitalized patients, because they are around the patients at all times, and they are the ones that initiate and follow up pain treatment. Few studies have investigated cancer patients’ experiences of pain management. However, one Finnish study by Simonsen-Rehn, et al. (Simonsen-Rehn, Sarvimäki, & Sandelin Benkö, 2000) interviewed cancer patients about their experiences of care related to pain. They found that patients wanted pain to be relieved by medication, but they also emphasized the importance of contact and communication with the nurses. Furthermore, they claimed that in pain management, nurses forgot the existential part of the human experience and they did not get help with the experience of pain. The patients saw respect for human beings and for patients’ integrity as an important aspect of pain-related care. In a study investigating which aspects of nursing practice are recognized and valued by cancer patients, the nursing practice expected by the patients was defined positively by what nurses “are” and “do” (Tishelman, 1994), as well as negatively by what they do not do. Based on this background, the aim of the present study was to deepen the understanding of cancer patients’ experiences of nursing pain management during hospitalization for cancer treatment by exploring: 1) patients’ experiences of their pain and how they described it; 2) patients’ experiences with the nursing care they received in relation to their pain; and

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3) their expectations of nurses in relation to pain management.

METHODS The aim of this study was to derive low-inference descriptions of cancer patients’ experiences of nursing pain management, remaining as close to the data as possible and without deliberate attempts to impose the researcher’s theoretical position on the patient’s expressed meaning. Therefore, the chosen method for this study was qualitative description as outlined by Sandelowski (2000): Basic qualitative description is not highly interpretive in the sense that a researcher deliberately chooses to describe an event in terms of a conceptual, philosophical, or other highly abstract framework or system. The description in qualitative descriptive studies entails the presentation of the facts of the case in everyday language. (p. 336)

Qualitative description was deemed to be the most appropriate method for this study, because a straight description of participants’ responses was desired for this exploration of patients’ experiences and expectations in relation to nursing pain management. Participants A convenience sample of 18 cancer patients participated in the study: 7 men and 11 women. The patients were recruited from different wards at a Norwegian cancer hospital. The inclusion criteria were as follows: 1) female participants with breast cancer or male participants with prostate cancer; 2) advanced cancer, including skeleton metastases; and 3) patients with pain. To ensure that all participants had a pain problem, their medical charts were reviewed before they were included in the study. Patients with breast or prostate cancer were selected, because both men and women were required as participants and both of these groups can have skeleton metastasis that produces pain. Data Collection Data were collected by in-depth interviews conducted by a nurse (T.G.) at the pain clinic over a period of 1 year, starting in 2004. The nurse was highly familiar with the type of patient being interviewed. The patients had not been at the pain clinic before, so they did not know the interviewer. Interviews were conducted using a semistructured interview guide, and each one lasted from 30 to 90 min. The interview guide was based on that used in a similar study by Simonsen-Rehn et al. (Simonsen-Rehn, Sarvimäki, & Sandelin Benkö, 2000).

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TABLE 1. Interview Guide 1. Patients’ experiences of pain. —How they described their pain. 2. Patients’ experiences with the nursing care they received in relation to their pain. —Describe the nurses that have helped you with your pain. —Has anyone talked with you about your pain? —Was anything done to relieve your pain? Who offered you help with your pain? —What relieved or increased your pain? 3. Patients’ expectations of nurses in relation to pain management. —Describe what is good nursing care when in pain. —Do you have any wishes related to nurses in pain management?

Before the interviews started, patients were told that the nurse could not give advice during the interview but that there would be an opportunity to ask questions afterwards. A short briefing about the purpose of the study was then given. The patients’ age, marital status, cancer diagnosis, and disease duration was collected from all the patients. Patients were first asked an open question about their general experiences with hospitalization and illness. During the interview, a numeric rating scale (NRS) was used to collect data about the patient’s pain intensity for “pain now” and “worst pain.” The NRS was from 0 to 10, where 0 was “no pain” and 10 was “worst pain imaginable.” The themes in the interview guide are outlined in Table 1. They were then encouraged to talk about their experience of pain. The next section of the interview guide explored their experiences with the nursing care they had received in relation to their pain, if anybody had talked with them about their pain, and what relieved or increased their pain. Finally, they were asked about their expectations of nurses in relation to pain management, to describe good nursing care when in pain, and if they had any wishes related to nurses in pain management. All interviews were audiotaped and transcribed word by word. Patients were given breaks during the interview if they felt sick or fatigued. Data Analysis Material was analyzed using Malterud’s (2003) modified version of systematic text condensation. Analysis followed four steps. First, each transcript was read intuitively and any perceptions of shifts in meaning throughout the text noted. Second, the sentences

from each of the transcripts were structured into themes. Third, the themes from step two for all interviews were compared. Finally, themes were examined in the context of all of the interview transcripts to decide final themes. Two researchers (T.R. and A.K.W.) read and analyzed the material independently and then agreed on the process of text condensation and the final themes. Credibility of the findings was enhanced by the two researchers (T.R. and A.K.W.) reading and analyzing the material independently, and then reaching consensus on the process of text condensation and the final themes. Data from the NRS about pain intensity (pain now and worst pain) were examined and summed for all patients using descriptive statistics. Ethical Consideration All of the participants received verbal and written information about the aim and design of the study. They were assured that they had the right at any time to discontinue their participation, and that the data would be handled in a confidential way to be used only for the declared purpose. This study was recommended by the Regional Ethics Committee and approved by the Norwegian Radium Hospital’s protocol review system and the Norwegian Data Inspectorate.

FINDINGS Because the description of the patients’ experiences about pain management from nurses and their expectations about nurses were so interrelated with the patients’ statements (aims 2 and 3), they were combined for the presentation of the results. Characteristics of the Participants The participants’ ages ranged from 45 to 79 years, with the majority of participants being between 50 and 69 years old (Table 2). Twelve were married, three were widowed, and three were divorced. Disease duration varied from newly diagnosed to 15 years. Three of the participants had had the disease for less than 2 years, and six had had the disease between 2 and 4 years. Four patients had had the disease for 5 or 6 years, and two participants for 12 and 15 years. All of the patients received radiation therapy for their skeleton metastases. Characteristics of Pain—How Participants Described Their Pain Regarding pain intensity, five of the participants reported no pain during the interview, and three participants reported a “pain now” intensity score of ⱖ4 (two reported a score of 5 and one a score of 6) (Table

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TABLE 2. Demographic and Disease Characteristics Men (n ⴝ 7)

Women (n ⴝ 11)

Age 45-50 years 0 1 50-59 years 2 5 60-69 years 2 4 70-79 years 3 1 Mean age 67.1 yrs 57.4 yrs Marital status Married 5 7 Divorced 1 2 Widowed 1 2 Pain now NRS 0 3 2 NRS 1-3 4 6 NRS 4-6 0 3 Worst pain NRS 5-6 1 3 NRS 7-9 2 3 NRS 10 4 5 Duration of the Mean 2.4 yrs (range Mean 5.5 yrs (range disease ⬍1 yr to 6 yrs) ⬍1 yr to 15 yrs) NRS ⫽ numeric rating scale (range 0-10).

2). Regarding “worst pain,” as many as 14 participants reported severe pain intensity (score from 7 to 10 on the NRS). Ten of the participants reported that they had breakthrough pain. Patients described a variety of factors that relieved their pain. These factors are categorized into five different themes: diversion, treatment, staying calm, caring surroundings, and self-care activities. Examples from each theme are illustrated in Table 3. Factors that increased pain were mainly related to physical activities such as walking or sitting for a long time and movement. Patients used a variety of descriptors to express their pain experiences. The following words were commonly used: aching, shooting, radiating, stabbing, splitting, squeezing, painful as ants, cruel, enormous, like giving birth, like a claw, sharp, icy cold, hot, burning, toothache in the lower back, heat, pressure, like a clamp, beaten with an iron stake, waves, electric shock, beating, rocking, throbbing.

The Patients’ Experiences in Relation to Nursing Pain Management The overriding theme regarding patients’ expectations regarding nursing pain management is that cancer patients experience the significance of nurses in pain management. However, from the data it seems that

TABLE 3. Factors Experienced by Patients to Relieve Pain Themes Diversion

Treatment Stay calm Caring surroundings Self-care activities

Examples Tells herself that pain does not exist, thoughts effective, talking with others, thinking of something else—reading—knitting Radiation therapy, medications, ointments, courses (alternative), touching Lying down, sitting calmly, calm—no movement, reduces activity, doing nothing People around you that care, friends Physical inactivity, anger on pain, being warm, pillow

nurses should have a clearer role in cancer pain management that goes beyond the administration of medications. Four themes emerged from the data, as illustrated in Figure 1. 1) Being present and supportive; 2) giving information and sharing knowledge; 3) taking care of medication; and 4) recognizing pain were seen as important abilities and competencies in nursing pain management. Patients stated that the nurses were caring; however, there were individual differences in how they acted regarding pain management. Patients experienced a lack of information from nurses in relation to pain management. However, patients found it difficult to express specific expectations. They were unsure of what to expect from nurses. 1) Being Present and Supportive. Patients talked about nursing pain management as the nurse being a Recognizing the pain • Seeing the patient • Reliving pain

Being present and supportive • A caring person • Trustworthy • Empathetic Expectancies of nursing pain management

Taking care of medication • Well managed • Knowledge of best available method

Giving information and sharing knowledge • Did not discuss the details

FIG. 1. y Themes in patients’ expectations of nursing pain management.

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caring person. They described a caring person using words like: affable, helpful, kind, understanding, fantastic, nice, forthcoming, taking pain seriously, and a person who gives medication at once.

Caring abilities, such as having empathy, being present, and being trustworthy, emerged as common expectations of nurses in relation to pain management. For pain relief, it was important that nurses had time listening to their pain problems and dared to care about it. For example, “It often helps talking with the nurses about pain. Then I forget it for a while.” Relief from pain occurred when nurses gave hugs or held patients’ hands, and some patients expected these actions. Patients wanted to be taken seriously and expected that nurses would be people who would share their suffering by acting like fellow human beings: “A good nurse is a caring nurse”; “You can always trust them.” Nurses were also expected to be nice and kind in relation to pain management. 2) Giving Information and Sharing Knowledge. Although nurses asked about pain all the time, almost all of the patients stated that nurses had not talked with them about their pain. The doctor talked more about pain than nurses did. It was up to the patients to ask if they needed information: “The nurses try the best they can, but I do not know how much medication to take”; “The nurses could have been more eager to offer their help.” Patients expected nurses to give information and share knowledge. Patients anticipated that nurses would be knowledgeable in pain management and explain about pain without the patients needing to ask. Nurses were expected to offer their knowledge to patients and relate their knowledge to each patient’s pain situation. Patients experienced reduced uncertainty and anxiety when nurses gave information and shared knowledge about pain management. However, if nurses started asking too many questions, the patients’ anxiety levels could increase: “All these questions make me feel nervous.” Some patients also highlighted the importance of nurses giving them written material about pain and pain management. 3) Taking Care of Medication. The patients’ experience was that nurses were highly skilled when taking care of medication for pain: “The nurses administered medications well, sometimes lots of medications.” It was also an important expectation of patients that nurses took care of pain medication. Nurses should manage pain medication by being proactive and offering patients medication that would remove the pain but not impair their vitality and consciousness: “The nurses come with medication as soon as I

give a sign.” Nurses were expected to know the best methods for patients in order to reduce their pain and suffering through pain medication: “It is important that the nurses sit down and talk directly to me about my pain problem.” 4) Recognizing the Pain. Patients expressed the importance of nurses recognizing their pain and taking the pain seriously by talking about it. They should also be able to “see the pain through signs” without needing to ask the patient all the time: “They know when I’m in pain.” Nurses were expected to anticipate patients’ pain and be responsible for relieving their pain: “It seems as they [nurses] are ahead of the pain. That makes me feel secure.” Nurses should take the initiative and be prepared to offer medication for each patient’s pain management: “The good nurse is with me as soon as the pain occurs.”

DISCUSSION The patients in the present study all had a severe disease. As many as 14 out of 18 reported severe pain, and 10 patients also reported breakthrough pain. From the patients’ descriptions of their pain and because they all had skeleton metastases, they were assumed to have both nociceptive (throbbing, aching, cramping) and neuropathic (burning, sharp, shooting) pain. Consequently, the majority of these patients were in need of specialized pain management and care. The major finding in the present study is that nurses were described as important in pain management but their contribution to pain management was not easy for the patients to describe. Nurses were seen as caring persons who give out pain medication, but the patients did not describe their skills and competencies. In a study describing caring and uncaring encounters with nurses from the perspective of a cancer patient, a professional caring approach was one where the cancer patients perceived nurses as both caring and competent (Halldorsdottir & Hamrin, 1997). Other studies have concluded that a caring experience has more to do with what the nurse is and the interpersonal aspect of care, not with the tasks a nurse performs (Clarke & Wheeler, 1992). It is not clear if the present findings are due to the intrinsic nature of nursing, because nurses are the people who are “always there.” An alternative explanation may be that the nurses’ skills are very poor. However, nurses need to work harder to make their role clear so that their skills and competencies are more visible to their patients, e.g., in relation to counseling and patient education. In a recent study investigating cancer patients’ descriptions of nurses and nursing care, the patients found nurses to be laudable (commendable qualities of the nurse and nursing care, important, hard working),

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caring (showing compassion, concern, and kindness), and professional (knowledgeable, having skills, dedicated) (Radwin, Farquhar, Knowles, & Virchick, 2005). There may be many reasons for the differences between what these researchers found and what is described in the present study. One major difference is that in the present study we only asked about the patients’ experiences related to nurses and pain management, whereas in the other study they focused on the total nursing care. One major theme described by patients in the present study was that the nurses were present and supportive. The nurses were described as caring persons who were trustworthy. They listened to patients and took their pain seriously. This is significant, because we know that people who have been diagnosed with cancer are described as undergoing a life-changing experience and existential changes (Halldorsdottir & Hamrin, 1996). They are vulnerable, and these patients also have pain, which is described as being the most feared consequence of having a cancer diagnosis (Management of cancer pain with complementary therapies, 2007). The behavior of the nurses is in accordance with the nursing action of “presencing” described by Benner and Wrubel (1989). That means being there for the patients and acknowledging the shared humanity of both nurse and patient. In the study by Simonsen-Rehn, et al. (Simonsen-Rehn, Sarvimäki, & Sandelin Benkö, 2000) patients revealed examples of uncaring behavior that included neglect of their mental and emotional needs, as well as occasions when staff did not prevent or relieve their pain. Another important theme was about giving information and sharing knowledge. One interesting finding here was that patients said that nurses asked about their pain all the time, but did not talk to them about the pain. This might mean that there was not any dialogue about pain and it was up to the patients to ask if they needed information. This finding is consistent with earlier research (Simonsen-Rehn, Sarvimäki, & Sandelin Benkö, 2000). It is also claimed that nurses lack knowledge and competence regarding the treatment of pain (Skauge, Borchgrevink, & Kaasa, 1998). Patients in the present study expected nurses to give information and share knowledge, and this emphasizes that patients expected that nurses would be knowledgeable in pain management and would explain about pain without the patients needing to ask. Earlier research also concludes that patients need to communicate their experiences of pain to manage the pain adequately and that they want to talk about and describe the pain to get help (Larsson & Wijk, 2007). Tishelman (1994) suggests that “it may be important for nurses to be the initiators of discussions, actively allowing and requesting questions, and thereby indicate

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that information is an intrinsic part of the nursing role” (page 221). Even if the nurses were supposed to offer their knowledge to patients and relate their knowledge to each patient’s pain situation, nurses who asked too many questions could increase patients’ anxiety level. Other studies have also described how patients sometimes have to conceal their pain to manage their everyday environment (Larsson & Wijk, 2007). Some patients highlighted the importance of nurses giving them written material about pain and pain management. This use of structured guidelines and continuous pain education in pain management is also emphasized in earlier research, and it helps patients become more independent (Larsson & Wijk, 2007). In the present study, doctors talked to patients more about pain than nurses did. One speculation around this finding could be that patients found it easier to remember the physicians, because they were fewer and visited the patients less often. Earlier research has revealed that cancer patients describe the physician’s role as less diffuse than nurses and more often related to specific incidents and more often focused on actions (Tishelman, 1994). Patients experienced that the nurses were highly qualified when taking care of medication for pain. Nurses were expected to know the best approach for each patient in relation to reducing pain through medication. On the other hand, these patients were still in pain and the majority were in severe pain, yet they did not complain in the interviews about the treatment they received. In the Finnish study, however, some of the patients said that they received too little pain medication when they were in severe pain (Simonsen-Rehn, Sarvimäki, & Sandelin Benkö, 2000). One interesting finding was that patients did not report that they expected any treatment from nurses in addition to medications. In the Finnish study, patients said that they would have expected the nurses to offer additional treatment (Simonsen-Rehn, Sarvimäki, & Sandelin Benkö, 2000). The reason for not offering nonpharmacologic strategies may be that nurses lack knowledge about them. A Norwegian survey reported that nurses evaluated their knowledge as fairly poor or very poor regarding nonpharmacologic treatment methods for pain (Skauge, Borchgrevink, & Kaasa, 1998). Failure to provide nonpharmacologic treatment is also related to lack of time for the nursing staff. These methods are usually more time consuming. Although they may help reduce anxiety and stress and promote relaxation, they are not as effective as pain medications in relieving pain, and most nurses know this. Listening to music is one nonpharmacologic treatment that is easily implemented and documented to be somewhat effective

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to reduce pain intensity levels and opioids requirements (Cepeda, Carr, Lau, & Alvarez, 2006). Patients expressed the importance of nurses recognizing the pain and taking the pain seriously by talking about it. Nurses were expected to anticipate patients’ pain and be responsible for relieving their pain. Nurses should take the initiative and be prepared to offer medication for each patient’s pain management. To increase the awareness of pain and improve pain management in cancer patients, the Quality of Care Committee of the American Pain Society have developed and tested the implementation of guidelines to improve treatment outcomes since 1991 (American Pain Society Quality of Care Committee, 1995). These guidelines have five key elements; the first one is “assuring that a report of unrelieved pain raises a ‘red flag’ that attracts clinicians’ attention.” In contrast to the Finnish study, where patients complained about the pain management offered, the patients in the present study did not clearly complain about poor pain management, even if they experienced severe pain. Despite the fact that patients report satisfaction with pain management, ineffective treatment is often described (Miaskowski, 1996; Panteli & Patistea, 2007). In the present study, the interviews were conducted by a nurse from the hospital, which might have been a reason why patients did not want to complain about the caring and pain management they were offered. It is also a challenge when interviewing patients that some tend to express views that are consistent with social standards and try not to present themselves negatively. Another possible limitation in the present study is that the quality of the data collection and the results are highly dependent on the skills of the interviewer and on the rigor of the analysis. The interviewer was an oncology nurse who had experience caring for these patients, and she was trained to do the interviews. The use of a semistructured interview guide also helped to keep the interviews focused on the issue in question. In addition, the nurse was instructed to cease the interview if the patient became fatigued. Only one interview was terminated for this reason. Another possible limitation is that when doing the analyses of the data one can question if the interviews may have been closed too early. The observations that

the patients did not report that they expected any treatment from nurses other than medication management, yet described a host of factors that helped relieve pain and the anxiety produced when nurses asked too many questions, suggest premature closure in data analysis. A further possible limitation is the validity of data from interviews with the three patients with a painnow score above 3, because pain above the mild level may affect cognition. However, all of these patients were judged to be able to be interviewed by the research nurse. This nurse is very experienced in dealing with cancer patients in pain. The nurse that performed the interviews also advised the patients with a high pain score to obtain help for their pain immediately after the interview was completed. If they needed help, the nurse contacted the nurses on the ward. A final possible limitation may have been the influence of factors such as recent surgery or other treatments on the results. We knew that all of the patients were receiving palliative radiation treatment and also receiving analgesics for their pain. Findings from the present study can increase nurses’ awareness of their role in pain management as a step toward improving pain management for patients. It highlights some clinical implications for nursing pain management in cancer. Cancer care and pain management require special skills. The finding from the present study that cancer patients in pain see nurses as very important yet experience difficulty in describing nurses’ skills raises the question of nursing pain practice being invisible and narrow in scope. In the management of uncontrolled pain, a comprehensive pain assessment is required. This is an important task for nurses. Furthermore, nonpharmacologic treatments, such as massage, relaxation, and active coping training, can be recommended (National Comprehensive Cancer Network, 2007). Attention should also be focused on psychosocial support by providing education to patients and their families and reducing the side effects of analgesics (Miaskowski, et al., 2004; West, et al., 2003). By expanding the scope of nursing pain management, the role of nurses in pain management may become more visible.

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