Cancer-related pain in palliative care: patients' perceptions of pain management

BACKGROUND: Pain is still a significant problem for many patients with cancer, despite numerous, clear and concise guidelines for the treatment of cancer-related pain. The impact of pain cognition on patients' experiences of cancer-related pain remains relatively unexplored. AIM: The aim of this study was to describe how patients with cancer-related pain in palliative care perceive the management of their pain. METHOD: Thirty patients were strategically selected for interviews with open-ended questions, designed to explore the pain and pain management related to their cancer. The interviews were analysed using a phenomenographic approach. FINDINGS: Patients described 10 different perceptions of pain and pain management summarized in the three categories: communication, planning and trust. In terms of communication, patients expressed a need for an open and honest dialogue with health care professionals about all problems concerning pain. Patients expressed an urgent need for planning of their pain treatment including all caring activities around them. When they felt trust in the health care organization as a whole, and in nurses and physicians in particular, they described improved ability and willingness to participate in pain management. While the findings are limited to patients in palliative care, questions are raised about others with cancer-related pain without access to a palliative care team. CONCLUSION: The opportunity for patients to discuss pain and its treatment seems to have occurred late in the course of disease, mostly not until coming in contact with a palliative care team. They expressed a wish to be pain-free, or attain as much pain relief as possible, with as few side effects as possible.     

Patient experiences of pain and pain management at the end of life: a pilot study.

Cancer pain is a difficult symptom for patients to handle, causing patients extreme discomfort and a decreased quality of life. To support independent pain control for patients with refractory pain while staying in their home, an intrathecal approach for continuous pain management with patient-controlled extra doses from an external pump was implemented. Pain management was supported by a structured guideline for the nursing interventions: To enhance the understanding of how the patients experienced their pain and the continuous pain management at the end of life, a pilot study was conducted. The study followed a qualitative design with unstructured tape-recorded interviews. Three themes emerged from the analysis: (1) The pain was dreadful, reminding the patient of the cancer and the uncertainty of the future; (2) the need to reveal and conceal pain coexisted; and (3) the pain management and structured guideline contributed positively to gain a new perspective on health in which pain did not play the central role. The conclusion is that patients need to communicate their experiences of the pain to manage the pain adequately, while at the same time they need to conceal it to manage their everyday environment. Forthcoming research will focus on the relation between the pain and the way patients experience cancer and on the experience and specific needs of their family.     

Patients' experiences of laparoscopic cholecystectomy in day surgery

Previous research has concentrated mainly on surgical aspects and postoperative complication rates after day surgery laparoscopic cholecystectomy (LC), and less on patients' experiences and nursing care aspects. A qualitative study was conducted aimed at investigating patients' experiences of LC in day surgery. Ten women and two men were interviewed. The material was coded, categorized and analysed using qualitative analysis. The findings demonstrate that individuals with gallstone disease experience limitations in their daily life and feelings of socially handicapped. Prior to surgery, the patients felt anxious and expressed a wish for tranquilizers, and to meet the surgeon responsible. At discharge after day surgery, amnesia was experienced and the respondents did not remember important information about the operation given by the surgeon. Experience of postoperative pain varied greatly. Several respondents had a relapse of pain on the third day lasting up to 1 week. The need for additional pain medication and a bloated feeling were reported. Some respondents reported nausea and vomiting, and most had questions about wound care. The need for additional telephone follow-up was mentioned, as was the fact that it was difficult to come home to small children. However, the great majority felt that returning home on the same day as the operation, was positive.     

Ethical challenges in the management of chronic nonmalignant pain: negotiating through the cloud of doubt.

After successful cancer pain initiatives, efforts have been recently made to liberalize the use of opioids for the treatment of chronic nonmalignant pain. However, the goals for this treatment and its place among other available treatments are still unclear. Cancer pain treatment is aimed at patient comfort and is validated by objective disease severity. For chronic nonmalignant pain, however, comfort alone is not an adequate treatment goal, and pain is not usually proportional to objective disease severity. Therefore, confusion about treatment goals and doubts about the reality of nonmalignant pain entangle therapeutic efforts. We present a case history to demonstrate that this lack of proportionality fosters fears about malingering, exaggeration, and psychogenic pain among providers. Doubt concerning the reality of patients' unrelieved chronic nonmalignant pain has allowed concerns about addiction to dominate discussions of treatment. We propose alternate patient-centered principles to guide efforts to relieve chronic nonmalignant pain, including accept all patient pain reports as valid but negotiate treatment goals early in care, avoid harming patients, and incorporate chronic opioids as one part of the treatment plan if they improve the patient's overall health-related quality of life. Although an outright ban on opioid use in chronic nonmalignant pain is no longer ethically acceptable, ensuring that opioids provide overall benefit to patients requires significant time and skill. Patients with chronic nonmalignant pain should be assessed and treated for concurrent psychiatric disorders, but those with disorders are entitled to equivalent efforts at pain relief. The essential question is not whether chronic nonmalignant pain is real or proportional to objective disease severity, but how it should be managed so that the patient's overall quality of life is optimized. PERSPECTIVE: The management of chronic nonmalignant pain is moving from specialty settings into primary care. Primary care providers need an ethical framework within which to adopt the principles of palliative care to this population.     

Fatigue as experienced by patients with rheumatoid arthritis (RA): a qualitative study

OBJECTIVE: Interest in fatigue research has grown since the finding that fatigue is, besides pain, the symptom most frequently reported by patients with rheumatoid arthritis (RA). The aim of this study was to explore the experience of fatigue from the patients' perspective. METHODS: Twenty-nine patients with RA filled-out written questionnaires on fatigue severity, disability, quality of life and sleep disturbance, and disease activity was calculated using the Disease Activity Score (DAS28). All patients were individually interviewed and asked about fatigue. Qualitative analyses were completed using software program "The Observer". Basic codes, a code plan and coding rules were developed by two researchers through a consensus-based review process. Frequencies of the central codes were calculated by the program SPSS. RESULTS: RA fatigue is verbalised as a physical everyday experience with a variety in duration and intensity. Its sudden onset and exhausting nature is experienced as frustrating and causing anger. Patients mentioned having RA as the main cause of their fatigue. The consequences of fatigue are overwhelming and influence patients' everyday tasks, attitudes and leisure time. Patients described how they have to find their own management strategies by trial and error and described pacing and rest, relaxation and planning activities as the most appropriate interventions. Downward comparison and acceptance as part of the disease are also reported as successful coping strategies for fatigue. Most patients did not discuss fatigue with clinicians explicitly, accepting that they were told that fatigue is part of the disease and believing that they have to manage it alone. CONCLUSION: The results show that RA fatigue is experienced as being different from "normal" fatigue. Patients do not expect much support from health care professionals, assuming that they have to manage fatigue alone as it is part of the disease. These results will help professionals caring for RA patients to communicate about fatigue, to explore the nature of fatigue individually and to develop tailored interventions.     

Uncertainty in breast, prostate, and colorectal cancer: implications for supportive care.

PURPOSE: The aim of this paper was to identify and explore the literature for key aspects of uncertainty experienced by patients who have been diagnosed with breast, prostate, or colorectal cancer. ORGANIZING CONSTRUCT: Throughout the cancer journey important decisions are made about treatments, symptom control, and supportive care and many approaches have been adopted to examine coping and uncertainty associated with a cancer diagnosis. Uncertainty and its associated attributes, such as stress or anxiety, fluctuate across the disease trajectory. To appreciate the changing nature of uncertainty one should consider its effect on specific patient groups by considering the available evidence. METHODS: A comprehensive literature search that was focused on reviews and studies about uncertainty in cancer patients was conducted in PubMed and CINAHL. In total, 40 articles were identified that indicated uncertainty in patients with breast, prostate, or colorectal cancer, although the emphasis in each differed according to the nature and treatment of the disease. FINDINGS: Uncertainty was found to comprise three main themes: uncertainty because of limited or lack of information, uncertainty concerning the course and treatment choices related to the disease, and uncertainty related to everyday life and coping with the disease. CONCLUSIONS: Uncertainty influences patients' experiences of their cancer and their coping. Whilst it might be impossible to avoid uncertainty entirely, its negative effects might be ameliorated by understanding patients' specific needs along the disease trajectory of breast, prostate, and colorectal cancer.     

The impact of the nurse-physician professional relationship on nurses' experience of ethical dilemmas in effective pain management.

The aims of the current investigation were (1) to examine the ethical and professional conflicts experienced by Tasmanian registered nurses in attempting to provide optimal pain management, and (2) to examine nurse satisfaction with their professional relationship with physicians and with their level of involvement in pain management. A total of 1,015 registered nurses completed a 21-item survey examining ethical and professional conflicts encountered during patient pain management. Data also were gathered investigating nurse satisfaction with their involvement in and professional relationship with physicians during pain management. The respondents who felt adequately consulted by physicians were significantly more likely to instigate the consultation process than the respondents who felt that they were not adequately consulted by physicians about their patient's pain status. This was marked in relation to the need for increased pain relief medications. Nurses who did not feel adequately consulted by physicians were significantly more likely to experience ethical conflicts such as concerns about undermedication and patient reluctance to report pain. Nurses' concerns related to ethical conflicts concerning effective pain management are affected by their relationship with physicians. Education, for both nurses and physicians, concerning the role of the nurse in the workplace will help to ensure that these conflicts do not arise. Guidelines concerning the level of patient care at which consultation is necessary will ensure fewer conflicts and greater nurse satisfaction in the workplace.     

帕金森病患者对疼痛认知体验质性研究

目的 了解帕金森病患者的疼痛体验及认知,为采取针对性疼痛护理措施提供依据。方法 运用质性研究中的现象学分析方法,对17例伴有疼痛的帕金森病患者进行半结构式访谈。访谈提纲包括6个问题：（1）您对帕金森病相关的疼痛了解吗?请您具体说说 （2）如果根据数字评分表(NRS)对疼痛进行评分,您觉得最高评分是多少? 可以谈谈您疼痛的感受吗?（3）当您感到疼痛时,您是如何应对的?（4）您是否向亲人或者医护人员主动说起您的疼痛经历?（5）您认为亲人和朋友的关心和支持对您重要吗?（6）针对帕金森病疼痛,您希望得到什么帮助呢?结果 共析出3个主题：疼痛体验深刻;对疼痛的应对不足;外源性支持不足。结论 疼痛严重影响帕金森病患者的生活质量,应重视患者的疼痛体验,加强知识宣教;关注居家照护,增加社会支持;立足评估治疗,加强疼痛管理,从而建立规范的疼痛管理模式,提高帕金森病患者的生活质量。     

Contrasts in Patients' and Providers' Explanations of Rheumatoid Arthritis

Purpose: To investigate explanations of rheumatoid arthritis (RA) from young women's perceptions of the illness experience and providers' understanding of the disease.
Design and Methods: This ethnographic study included 17 women from age 26 to 40 years who were under medical care for RA, and five health care providers of these participants.
Findings: Two main themes were identified: (a) having RA 'is a pain' and (b) it changed me. The first theme represented the participants' physical and emotional suffering, interferences in their everyday lives, and aggravations in receiving health care. The second theme represented the life and lifestyle changes the women experienced as a result of having RA. The providers' explanations included two themes: (a) functioning in a normal manner and (b) controlling the disease. The first theme was keeping the women's physical functioning as normal as possible. The second theme was the providers' goal to control the disease, which they believed would lead to the preservation of joint function and manageable pain levels. Regarding results of health care, the participants and providers had comparable beliefs about decreasing the physical pain and improving joint function but they had disparate notions about the participants' being active partners in communication and negotiation processes of their health care.
Conclusions: The findings indicated the importance of discovering potential disparities in patients' and providers' explanations of RA, and revealed the participants' desire for clinical support in becoming partners in their own health care.     

Sleep in hospitals at night: are patients’ needs being met?

Although the functions of sleep are not clearly understood, it is generally accepted that it is necessary for the maintenance of good health, and that the need for sleep increases with illness The findings of a study on the hospital in-patient night show that many patients do not consider that they have sufficient sleep in hospital at night, that discomfort, worries and pain may contribute to their wakefulness, that the sleep of many is disrupted by a variety of sources of disturbances, that ward lights are dimmed for the night for no longer than required by the average, healthy person, and that patients continue to be woken early in the morning A variety of ways of tackling these problems is proposed Differences in the perceptions of nurses and patients about certain aspects of in-patient care at night demonstrate the importance of systematically asking patients about their experiences Once viewed through patients' eyes, the everyday procedures, routines and environments of the hospital become visible and tangible influences on patient care, rather than part of the taken-for-granted context in which patients receive that care     

Family caregiving in cancer pain management

The experience of cancer pain is known to greatly affect family caregivers as well as patients. There are many demands placed on caregivers of cancer patients with pain at home as a result of the shifting of care from the acute setting to the home. These complex demands significantly affect caregiver quality of life. The purpose of this study was to describe the experience of pain management from the perspective of family caregivers of patients with cancer amidst the current healthcare environment. This quasi-experimental study involved 231 family caregivers of patients with cancer pain receiving home care. Family caregivers were assessed in conjunction with a pain education program that provided patient and. family education regarding pain assessment, drug and nondrug interventions. Assessment measures used were the Quality of Life (QOL)-Family Caregiver Tool, Knowledge and Attitudes about Pain (K&A) Tool, and Caregiver Finances Tool. Study findings reveal disruption to family caregiver quality of life in the areas of physical, psychological, social, and spiritual well-being. There is also a continued need for education regarding cancer pain management. Comparison between patients and family caregivers demonstrates that pain impacts both the patient experiencing it and their caregivers.     

The lived experience of the diabetes nurse specialist regular check-ups, as narrated by patients with type 2 diabetes

Aim. The aim was to elucidate the lived experience of regular diabetes nurse specialist check‐ups among patients with type 2 diabetes. Background. Diabetes care with diabetes nurse‐led clinics in primary care has been established in Sweden since the 1980s. Information about patients’ lived experience of these regular check‐ups is important in the further development of diabetes nursing in primary care. Methods. Narrative interviews were conducted with 10 women and 10 men with type 2 diabetes regarding their lived experience in everyday life and the regular check‐ups by the diabetes nurse specialist. A phenomenological‐hermeneutic method inspired by Ricoeur was used in the analysis. Results. Patients’– with type 2 diabetes – lived experience of regular check‐ups showed an overall positive influence on the patients’ way of living with the disease by underpinning and developing their understanding and management of daily life. This influence was interpreted as an interlinked chain comprising the following elements; being confirmed, being guided within the disease process, becoming confident and independent and being relieved. Every link contained a positive influence from being dependent‐independent, autonomous and a feeling of freedom in patients striving for an everyday life with a disease under control. Relevance to clinical practice. The development of diabetes‐nurse‐led clinics from the perspective of the patient must consider the patient's individual need for support and continuity with the diabetes nurse specialist. Consultations with collaborative partnership and specific expertise that is easy to access implied autonomous disease self‐management in terms of patients’ own control of the disease over time. In view of the increasing number of patients with diabetes, this could positively impact the availability of diabetes nursing care.     

Discrepancy between patients' perspectives,staff's documentation and reflections on basic nursing care

In recent years, Denmark has witnessed an increasing written and oral debate concerning the quality of basic nursing care. The present study is an attempt to characterize basic nursing care in a Danish hospital by collecting data on patient perceptions of their main somatic problems in seven pre-set categories. These data include documentation of patient problems in corresponding problem categories, and the staff's additional knowledge about patient problems. Triangulation of methods was used. Data were collected on 120 patients and from 22 nurses. The patients had 2.3 problems on average: pain (58%) and sleep (43%) were the problems cited most frequently. Only 31% of patients' experienced problems were documented in the nursing records. The nursing staff had more knowledge than was registered in the nursing records. However, one-third of the patients' problems was totally unknown to the nursing staff. From the patients' point of view, essential aspects of basic nursing care are overlooked in daily clinical practice. The findings show that the method employed is suitable for integration of the patients' perspective.     

The challenge of caring for patients in pain: from the nurse’s perspective

Aim. To increase understanding of what it is like for nurses to care for patients in pain. Background. Hospitalised patients are still suffering from pain despite increased knowledge, new technology and a wealth of research. Since nurses are key figures in successful pain management and research findings indicate that caring for suffering patients is a stressful and demanding experience where conflict often arises in nurses’ relations with patients and doctors, it may be fruitful to study nurses’ experience of caring for patients in pain to increase understanding of the above problem. Design. A phenomenological study involved 20 dialogues with 10 experienced nurses. Results. The findings indicate that caring for a patient in pain is a ‘challenging journey’ for the nurse. The nurse seems to have a ‘strong motivation to ease the pain’ through moral obligation, knowledge, personal experience and conviction. The main challenges that face the nurse are ‘reading the patient’, ‘dealing with inner conflict of moral dilemmas’, ‘dealing with gatekeepers’ (physicians) and ‘organisational hindrances’. Depending upon the outcome, pain management can have positive or negative effects on the patient and the nurse. Conclusions. Nurses need various coexisting patterns of knowledge, as well as a favourable organisational environment, if they are to be capable of performing in accord with their moral and professional obligations regarding pain relief. Nurses’ knowledge in this respect may hitherto have been too narrowly defined. Relevance to clinical practice. The findings can stimulate nurses to reflect critically on their current pain management practice. By identifying their strengths as well as their limitations, they can improve their knowledge and performance on their own, or else request more education, training and support. Since nurses’ clinical decisions are constantly moulded and stimulated by multiple patterns of knowledge, educators in pain management should focus not only on theoretical but also on personal and ethical knowledge.