Barriers to the analgesic management of cancer pain: a comparison of attitudes of Taiwanese patients and their family caregivers

The purposes of this study were as follows: (1) to compare the attitudes which were considered to be barriers to cancer pain management held by Taiwanese cancer patients and their family caregivers; (2) to determine if these barriers were related to patient hesitancy to take analgesics and/or family caregiver hesitancy to administer analgesics: and (3) to determine if attitudinal barriers by patients and/or family caregivers predicted the adequacy of analgesics that patients used. A total of 159 dyads of oncology outpatients and their primary family caregivers (n = 318) participated in this study. The instruments completed by patients consisted of the Barriers Questionnaire-Taiwan form, the Brief Pain Inventory-Chinese version, the ECOG performance status scale, and a demographic and medication questionnaire. Family caregivers completed the Barriers Questionnaire-Taiwan form and a demographic questionnaire. The data in this study revealed that patients and family caregivers had attitudinal barriers to pain management and these concerns were positively correlated between patients and caregivers. Patient concerns were related to their hesitancy to take analgesics and, similarly, caregiver concerns were related to their hesitancy to administer analgesics. Most importantly, patient and caregiver concerns had an impact on how the patients' pain was managed: (1) patients and their family caregivers with higher levels of concerns used inadequate analgesics as compared to patients using adequate analgesics; (2) family caregiver barriers (concerns) were a significant predictor of inadequate management of cancer pain (after controlling for demographic and disease variables). Therefore, educational interventions for overcoming these barriers for both patients and their family caregivers may have potential for improving the management of cancer pain in Taiwan.     

The self-efficacy of family caregivers for helping cancer patients manage pain at end-of-life

This preliminary study examined the self-efficacy of family caregivers with regard to helping cancer patients manage pain at end of life. A sample of 63 family caregivers of hospice-eligible cancer patients with pain provided ratings of their self-efficacy in assisting the patient in pain management and rated their own mood and level of caregiver strain. Patients completed measures of pain and quality of life. Data analyses revealed that caregivers who rated their self-efficacy as high reported much lower levels of caregiver strain as well as decreased negative mood and increased positive mood. Caregiver self-efficacy in managing the patient's pain was related to the patient's physical well-being. In dyads where the caregiver reported high self-efficacy, the patient reported having more energy, feeling less ill, and spending less time in bed. Considered overall, the results of this study suggest that caregiver self-efficacy in pain management is important in understanding how caregivers adjust to the demands of caring for cancer patients who have pain at the end of life.     

Identifying attitudinal barriers to family management of cancer pain in palliative care in Taiwan

The purpose of this study was threefold: (1) to examine attitudes held by Taiwanese family caregivers of hospice inpatients with cancer that serve as barriers to cancer pain management; (2) to determine the relationship of attitudinal barriers to family caregiver hesitancy to report pain and to administer analgesics; and (3) to determine the relationship of attitudinal barriers to the adequacy of analgesics used by the patient. A total of 80 pairs of palliative care inpatients and their primary family caregivers participated in this study. Family caregivers completed the Barriers Questionnaire-Taiwan (BQT) form and a demographic questionnaire. The instruments completed by patients consisted of the Brief Pain Inventory-Chinese version and a demographic questionnaire. The data revealed that Taiwanese family caregivers of palliative care patients with advanced cancer had concerns about reporting pain and administering analgesics, particularly as they related to disease progression, side-effects and p.r.n. analgesics. Older and less-educated family caregivers scored significantly higher on the BQT than did their younger, more educated counterparts. Family caregivers' concerns measured by the BQT were related to family caregivers' reluctance to administer analgesics to their patients. Implications for a broader understanding of analgesics in the advancement of pain management in palliative care in Taiwan are discussed.     

A randomized, controlled trial of a patient/caregiver symptom control intervention: effects on depressive symptomatology of caregivers of cancer patients

In this study, we investigated whether a clinical nursing intervention focusing on teaching family caregivers and their cancer patients skills to better manage the patients' symptoms would reduce caregiver depressive symptomatology. Two hundred thirty-seven patient/caregiver dyads were recruited for the study. These dyads were randomized into either the 10-contact, 20-week experimental intervention group (n=118), which focused on assisting the patient and caregiver in managing patient symptoms and reducing emotional distress, or to a conventional care control group (n=119). A longitudinal random effects regression analysis did not indicate that the clinical nursing intervention was effective in decreasing caregiver depression over the 20-week course of the study. The relationship of the intervention to caregiver depressive symptomatology seems to be a complex one. We recommend further research to explore whether a lengthened intervention and/or delayed follow-up might reveal delayed positive effects of such interventions.     

Family caregivers of palliative cancer patients at home: the puzzle of pain management

The purpose of this grounded theory study was to understand the processes used by family caregivers to manage the pain of cancer patients at home. A total of 24 family caregivers participated. They were recruited using purposeful then theoretical sampling. The data sources were taped, transcribed (semi-structured) interviews and field notes. Data analysis was based on Strauss and Corbin's (1998) requirements for open, axial, and selective coding. The result was an explanatory model titled "the puzzle of pain management," which includes four main processes: "drawing on past experiences"; "strategizing a game plan"; "striving to respond to pain"; and "gauging the best fit," a decision-making process that joins the puzzle pieces. Understanding how family caregivers assemble their puzzle pieces can help health care professionals make decisions related to the care plans they create for pain control and help them to recognize the importance of providing information as part of resolving the puzzle of pain management.     

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.     

Long-term effectiveness of a patient and family pain education program on overcoming barriers to management of cancer pain

The purpose of this research was to investigate the effectiveness of a patient and family pain education program on reducing cancer patients' and their families' barriers to (i.e., concerns or misconceptions about) cancer pain management, on increasing patients' adherence to a prescribed analgesic regimen, and on decreasing pain intensity and pain interference with daily life. An experimental and longitudinal design was used. The experimental group consisted of 31 pairs of cancer outpatients and their family carers, while the control group consisted of 30 patient-family pairs (N=122). Patients and their family carers in the experimental group simultaneously received a pain management education program. Both groups had pretest data collection and after-test follow-ups on the second and fourth weeks at the outpatient clinics. Comparisons between those two groups were made using the Generalized Estimating Equations (GEE) method. Results revealed that at both the second and fourth weeks, patients and family carers in the experimental group showed a significantly greater reduction in barrier scores than did patients and family carers in the control group. At the second and fourth weeks, patients in the experimental group reported significantly better adherence to a scheduled analgesic regimen than did patients in the control group. In the fourth week, patients in the experimental group reported significantly lower levels of worst pain intensity and pain interference than did patients in the control group. This research provides evidence of the effectiveness of a patient and family pain education program.     

Perceptions of patients' self-efficacy for managing pain and lung cancer symptoms: correspondence between patients and family caregivers

This study examined the degree of correspondence between lung cancer patients and their family caregivers in their perceptions of the patients' self-efficacy for managing pain and other symptoms of lung cancer, and the association of this correspondence to demographic, disease, and psychosocial variables. Thirty patients who were newly diagnosed with lung cancer and their primary family caregivers completed telephone interviews assessing the patient's symptoms, the patient's self-efficacy for managing symptoms, the quality of the relationship between the patient and caregiver, patient and caregiver psychological distress, and caregiver strain. Although patients and their caregivers showed a moderate degree of agreement in their perceptions of the patient's self-efficacy for managing pain and other symptoms, there was considerable variability in the degree of congruence. Factors that contributed to lower levels of congruence included low patient-rated self-efficacy, female gender of the patient, high patient psychological distress, and high caregiver strain. Caregivers were about evenly split in their tendency to overestimate versus underestimate the patient's self-efficacy. A poorer quality of relationship between the caregiver and the patient (as rated by the patient), high levels of patient-rated symptoms, and high levels of caregiver strain were associated with caregivers overestimating patient self-efficacy.     

Life-extending therapies among patients with advanced cancer: patients' levels of pain and family caregivers' concerns about pain relief.

The purposes of this article are to explore the extent to which oncology unit patients with advanced cancer in Taiwan receive life-extending therapies and to examine the relationship of care goals (curative vs palliative) to levels of pain and family caregivers' concerns about pain reporting and analgesic administration. Forty pairs of patients with advanced cancer and their family caregivers (N = 80) were recruited from inpatient oncology units in Taiwan. Of these patients, 53% were receiving chemotherapy or radiotherapy for life-extending or curative reasons as opposed to palliative goals. Patients with advanced cancer who were receiving life-extending therapies experienced lower levels of pain intensity than did those who were not receiving life-extending therapies. Moreover, Taiwanese family caregivers of patients with advanced cancer had concerns about reporting pain and administering analgesics regardless of whether the patient was receiving life-extending therapies. However, the family caregivers whose patients were receiving life-extending therapies were less concerned about using analgesics than were those caregivers whose patients were not receiving life-extending therapies. Finally, family caregivers' concerns about pain management as measured by the Barriers Questionnaire-Taiwan (BQT) form were related to family caregivers' reluctance to report their patients' pain. Implications of this study are discussed in terms of palliative care and pain educational programs.     

Nurses' willingness to manage the pain of specific groups of patients

Effective pain management remains a challenge for the nursing profession. While nurses' knowledge of appropriate pain strategies has improved considerably, additional research needs to be conducted into the influence of factors other than knowledge on the management of pain. This study examined the willingness of nurses (n = 157) and nursing students (n = 265) to spend time and energy managing the pain of different groups of patients, when told that all patients had the same degree of pain. The willingness of nurses to spend time and energy in managing patients' pain was used as a proxy for preconceived notions relative to particular groups of patients. A pattern emerged that suggested that nurses' and nursing students' willingness to spend time and energy managing patients' pain in influenced by their perceptions of different groups of patients.     

Barriers to pain management: caregiver perceptions and pain talk by hospice interdisciplinary teams

As patients are cared for in their homes by family caregivers, several challenges arise in effective pain and symptom management. Despite hospice's reputation as the gold standard for terminal care, there is still a need to improve pain management practices, including challenges that caregivers face, related to pain assessment, reluctance and fear of administering medication, noncompliance with pain medicine regimens, and hesitance to report pain. The hospice philosophy of care promotes service for both patients and their family by an interdisciplinary team, and total pain management is a goal of this care. The aim of this control phase of a larger National Cancer Institute-funded mixed methods study was to understand the current practice of hospice assessment and collaboration on informal caregiver issues related to pain management. This study of 30 hospice caregiver--patient dyads from one rural hospice found that 87% of caregivers indicated concern with at least one question on the Caregiver Pain Medicine Questionnaire. Interdisciplinary team discussions for 23 of the dyads were recorded over nine months for a total of 86 sessions. Although caregiver concerns were identified with the Caregiver Pain Medicine Questionnaire by the research team, there was only one discussion of caregiver pain-related concerns during the hospice team meeting. This despite the finding that 38% of the time involved in a patient discussion is spent on pain-related talk. These findings indicate an opportunity for improvement by hospice teams through focusing on caregiver assessment and intervention.     

照顾者教育对改善脑卒中患者及其照顾者健康状况的效果

目的探讨健康教育和技能培训对家庭照顾者的健康状况及脑卒中患者康复治疗效果的影响。方法脑卒中住院患者分为干预组38例,对照组36例,住院1个月均接受正规康复训练。对干预组家庭照顾者采用适时干预模式(Timing It Right)分阶段进行有针对性的知识教育和技能培训。干预前及出院3个月后对患者采用欧洲脑卒中量表(ESS)、简易精神状态检查(MMSE)、简易Fugl-Meyer评定(FMA)、改良Barthel指数(MBI)进行评定,对照顾者采用一般健康问卷(GHQ-12)进行评定。结果治疗后,干预组患者ESS、FMA、MBI均较对照组改善更多(P<0.05),照顾者在角色、紧张感、克服困难、面对问题、抑郁、失去信心、自我价值、日常活动范围项较对照组改善更多(P<0.05)。结论对家庭照顾者的教育和培训,能有效提高家庭照顾者的心理状况和护理技巧,继而进一步提高患者的康复效果。     

Relationship between pain-specific beliefs and adherence to analgesic regimens in Taiwanese cancer patients: a preliminary study

This pilot cross-sectional study aimed to 1) explore pain beliefs and adherence to prescribed analgesics in Taiwanese cancer patients, and 2) examine how selected pain beliefs, pain sensory characteristics, and demographic factors predict analgesic adherence. Pain beliefs were measured by the Chinese version of Pain and Opioid Analgesic Beliefs Scale-Cancer (POABS-CA) and the Survey of Pain Attitudes (SOPA). Analgesic adherence was measured by patient self-report of all prescribed pain medicine taken during the previous 7 days. Only 66.5% of hospitalized cancer patients with pain (n = 194) adhered to their analgesic regimen. Overall, patients had relatively high mean scores in beliefs about disability, medications, negative effects, and pain endurance, and low scores in control and emotion beliefs. Medication and control beliefs significantly predicted analgesic adherence. Patients with higher medication beliefs and lower control beliefs were more likely to be adherent. Findings support the importance of selected pain beliefs in patients' adherence to analgesics, suggesting that pain beliefs be assessed and integrated into pain management and patient education to enhance adherence.     

卒中单元中西医结合治疗对脑梗死患者生活质量及照料者心理状态的影响

目的:观察卒中单元中西医结合治疗对脑梗死患者生活质量及照料者心理状态的影响。方法:将197例患者随机分成对照组58例和治疗组139例,其照料者随之分为照料对照组和照料治疗组。对照组采用常规药物治疗、肢体康复、心理治疗、健康教育等,对照组照料者不作任何干预;治疗组在上述治疗的基础上,加用中草药方剂治疗,同时照料治疗组给予系统的脑卒中健康教育、康复知识、技能培训及适当的抗抑郁抗焦虑药物治疗。2组患者均于治疗前和治疗后第4周、8周、24周进行Barthel指数(BI)、Spitzer生活质量指数(QLI)评定;2组照料者均于治疗前和治疗后第4周、8周、24周进行汉密尔顿抑郁量表(HAMD)、汉密尔顿焦虑量表(HAMA)评定。结果:治疗4周后,2组BI、QLI评分与治疗前比较均有明显差异;与对照组比较,治疗组的BI及QLI评分有明显差异(P<0.05)。2组照料者抑郁41例(21.6%),焦虑55例(28.9%)。治疗后,照料治疗组抑郁、焦虑疗效明显优于照料对照组,差异有统计学意义(P<0.05)。结论:卒中单元中西医结合治疗和对照料者的综合干预能明显提高脑梗死患者的生活质量,且明显改善患者及照料者的心理状态。     

Moving to new settings: pilot study of families' perceptions of professional caregivers' pain management in persons with dementia

Persons with advanced dementia often have pain that is underrecognized and undertreated primarily because they cannot clearly communicate their needs. Consequently, they receive fewer analgesics than cognitively intact persons with the same conditions. Several assessment methods have been developed in the past decade, yet pain assessment and management problems persist in all care settings. These problems are likely to persist when patients move between levels of care. In this study, we determined from family caregivers whether pain was problematic when their family members with dementia moved to different care settings (e.g., admission or transfer). A total of 34 family caregivers responded to an anonymous survey; 50% reported that pain was not discussed at admission or after entry into a new care setting, and 67% were not confident that staff could detect pain. Respondents' recommendations for improving pain management included regular observation and assessment, timely and consistent pain medication administration, communication with family caregivers, and staff education.     

Family caregivers and cancer pain management: a review

Due to the critical role of family caregivers in cancer pain management, this systematic review was undertaken to examine what is known about of their experiences and needs. Searches were conducted using electronic databases, and research reports from 1991 to 2007 were analyzed using a matrix method. Family caregivers were actively engaged in assisting with pain management and experienced significant needs and concerns related to this role. Myths and fears about opioid use remain widespread across cultures studied and across care settings. Family caregivers need education about pain management, training in problem-solving skills, and recognition from providers about their role in pain management. When clinicians better understand and respond to the needs of the family caregivers, they can enhance the quality of life and care outcomes for both patients and their caregivers.     

Pain management autobiographies and reluctance to use opioids for cancer pain management

Although pain management education results in improved pain control for some patients, it does not work for all patients because some patients remain reluctant or unwilling to use prescribed analgesics to their optimal effect. In a randomized clinical trial that tested the effectiveness of the PRO-SELF Pain Control Program, 11 patients declined to increase their analgesic use despite moderate to severe pain. These patients were selected for a qualitative analysis of their audiotaped discussions about pain management with their intervention nurses. This analysis revealed that these patients often spontaneously provided detailed explanations about why they were reluctant or unwilling to take analgesics in general or opioids in particular. We termed these explanatory accounts pain management autobiographies because of their narrative character and multilayered, richly detailed quality. Pain management autobiographies included stories about (1) previous experience with chronic pain management, including stigmatizing interactions with clinicians and family members; (2) bad experiences with cancer pain management, including severe constipation; and 3) strongly held conventions about medication use, including the belief that all medications are "toxins" that should be avoided. The study findings suggest that a small subset of patients with cancer pain may need interventions such as individual or family counseling or alternative pain management strategies to augment education about opioids.     

Cancer patient and caregiver experiences: communication and pain management issues

This study examined facilitators and barriers to effective patient and caregiver communication with providers with emphasis on communication related to cancer pain management. Focus groups and personal interviews were conducted with cancer patients and family caregivers of patients. Communication experiences of subjects as well as suggestions for ways to improve the communication process were elicited. Twenty-two cancer patients and 16 family caregivers participated in the study. Seven themes emerged suggesting improvements that are needed in the communication process. These include: 1) improving the process of information exchange, 2) increasing active participation of patient and caregiver in the care process, 3) improving provider relationship-building skills, 4) overcoming time barriers, 5) addressing fears regarding use of pain management medications, 6) fostering appropriate involvement of family and caregivers in the communication process, and 7) improving coordination of care among providers. Specific suggestions and their practice implications for health care providers are highlighted.