我国延续性护理在癌痛居家患者中的研究进展

延续性护理对居家癌痛患者的生活质量具有重要作用,本文通过对国内癌痛居家患者开展延续性护理的必要性、具体形式和内容,及其干预后效果评价三方面内容进行综述,以期为构建和完善我国癌痛居家患者的延续性护理模式提供借鉴。     

Home parenteral nutrition: an ethical decision making dilemma.

Ethics is a hot topic these days. Home health care providers need not be ethicists, however they do need to be able to identify problems quickly, and know how to address them. This paper explores the ethical issues arising from a narrative analysis involving an advanced cancer patient receiving Total Parenteral Nutrition (TPN) at home. It shows how complicated it is today to make nutrition support decisions that would have been customary less than 30 years ago. For and against arguments of TPN for advanced cancer patients are reviewed. Ethical positions adopted by the medical and nursing professions are explored and contrasted. The importance of patient autonomy, within a holistic notion of care, including decisions incorporating quality of life, are affirmed, providing a challenge to monitoring the status quo in approaches to decision making.     

Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers

It is increasingly common that cancer patients are cared for at home at the end of life, with help from advanced home care teams. This may have positive implications for cancer patients and their families, but it may also be burdensome to the family caregivers with implications for their health and well-being. This qualitative study was therefore initiated to prospectively explore how family caregivers reason about their expectations of providing end-of-life care at home for relatives with cancer, enrolled in advanced palliative home care units. Ten interviews were conducted with 11 family caregivers at enrollment to the home care unit. A form of constant comparative analysis was used to generate two main themes from the data. One theme concerned the role transition into becoming a family caregiver, whereas the other theme relates to the transition to a new life situation of the caregiver (him/herself). The family caregivers describe themselves as the persons primarily bearing responsibility and providing care for their dying relatives. They were found to have many concerns about their own situation, especially in regard to issues temporally after the death of the patient, but seemed to have few expected sources of support related to these concerns. Professional support is described as expected primarily for care-related tasks, although hopes may be expressed about support in other areas. The distinction between resources described as existing in theory and those used in practice also are apparent in analysis of the interviews. If home care is to be a positive alternative to hospital care, individual expectations should be considered when planning supportive care.     

Problems faced by relatives caring for cancer patients at home

The care of patients suffering from advanced cancer is not limited in the hospital setting. It continues at home where the burden of care is borne by specific individuals. The aim of the present study was to survey and record the various problems faced by those who care for cancer patients at home. The study was conducted in our hospital during the summer of 2007. All participants completed, during a personal interview, a questionnaire which covered pathologic, social, psychological, spiritual/religious and financial problems. Seventy-six carers returned fully completed questionnaires. The most frequent problems reported were: anxiety regarding the patient's future (61.8%), troublesome symptoms such as pain (54%), increased economic burden—financial difficulty (51.3%), problems with patient's feeding (50%), unhappiness or depression (48,7%), emotional upset (47.4%), worsening of the patient's behaviour and personality (38.2%), difficulty of establishing a positive attitude regarding their current status (34.2%), transport to hospital (32.9%), assistance from the wider family circle (25%). Taking care of cancer patients at home creates several problems among carers. Many of them remain undetected. The acknowledgement and recognition of these problems by health-care professionals might contribute to finding solutions in order to assist the difficult task of these individuals.     

Advanced home care: patients' opinions on quality compared with those of family members

Background. Advanced medical care in the patient's home setting is becoming more common. Many of the patients who receive this kind of care have severe illnesses and are unable to respond to questions about the quality of care. The research question was: are the patients’ opinions congruent with those of family members? Aim. To explore and compare the relationship between patients’ perception of the quality of care and close family members’ perception of this care as well as their perception of the patients’ perception. Methods. Sixty‐seven patients receiving advanced home care, 82 family members (54 matched patient + family member pairs) participated. Data were collected using a short version of the quality from the patient's perspective questionnaire modified to advanced home care. Results. A high degree of perceptual congruence was found between patients and their family members. The similarity was also high between family members’ own opinion and their appraisal of how the patient perceived the care. A subgroup of family members who met the patient once a week or less often deviated from this pattern. Conclusion. Patients’ views on the quality of care are congruent with the opinions of family members if they meet every day (live together) and share the same everyday and care‐related experiences. The results can be understood in the light of empathic accuracy theory. Relevance to clinical practice. The findings of this study have important implications for clinical nursing practice. Family members’ perception of the quality of care may be a valuable data source for nurses in the case of advanced home care if the patient and family member share the same everyday, care‐related experiences, otherwise family members’ perception tend to be more critical than those of the patients themselves.     

Predictors of home death in palliative care cancer patients

With recent changes in health care there is greater emphasis on providing care at home, including the support of families to enable more home deaths. Since a home death may not be practical or desirable in every family situation, there is a need for an objective way to assess the viability of a home death in each individual family situation. The purpose of this study was to describe the relative role of predictors of home death in a cohort of palliative care patients with advanced cancer. A questionnaire was created as a means of assessing the viability of a home death. Five questions were included. Ninety questionnaires were administered by home care coordinators. A follow-up questionnaire was administered to record the place of death. Of the 73 evaluable patients, 34 (47%) died at home and 39 (53%) died in hospital or hospice. The desire for a home death by both the patient and the caregiver, support of a family physician, and presence of more than one caregiver were all significantly associated with a home death. Logistic regression identified a desire for home death by both the patient and the caregiver as the main predictive factor for a home death. The presence of more than one caregiver was also predictive of home death. The questionnaire is simple and, if our results are confirmed, it can be used for predicting those who will not have a home death.     

The lived experience of closeness in partners of cancer patients in the home care setting

At present there are few data available on the experiences of closeness in partners of patients with advanced cancer. The aim of this study was to explore the lived experience of closeness in partners of patients with advanced cancer in palliative home care. Ten partners of patients admitted to a palliative, hospital-based home care unit participated in this study. Tape-recorded interviews were conducted and Giorgi's phenomenological analysis was used. Three themes emerged: dimensions of closeness, such as togetherness, sharing and daily concern; prerequisites for closeness; and obstacles that hindered closeness. In essence, closeness was described as a changing process that was expected to end. This study has revealed the importance of closeness in the partners of patients with advanced cancer. Experiencing closeness is of great importance when the disease is no longer curable and time is limited. Partners need professional help to facilitate this experience.     

晚期癌症患者居家姑息照护服务影响因素的质性研究

目的 深入了解晚期癌症患者居家姑息照护服务现状及其影响因素,为规范发展居家姑息照护服务提供参考.方法 采用现象学研究方法,对10名社区卫生服务中心的医护人员进行非结构访谈,用现象学分析法进行资料分析.结果:社区卫生服务中心为晚期癌症患者开展定期随访、家庭病床、临时出诊等居家姑息服护服务,有待进一步拓展与完善;归纳影响居家姑息照护服务开展的3个主题为政策环境因素、服务供方因素、服务需方因素.结论:居家姑息照护服务的开展需要政策支持,完善杜区卫生服务和提高公众信任与理解.     

Multidimensional problems among advanced cancer patients in Cuba: awareness of diagnosis is associated with better patient status

Cancer is one of the major causes of death in Cuba, and in current practice, patients are not usually informed of their diagnosis. Palliative care is an emerging discipline in this country. Cuban cancer patients with advanced disease completed the Palliative Outcome Scale (POS), and the researcher elicited patients' knowledge of their condition and prognosis. The POS consists of 12 items that address the clinical, psychosocial, spiritual, family, and service delivery elements considered relevant to patients with advanced disease. Ten items are scored 0 (no problem) to 4 (worst problem), with one open-response question about the main problems experienced and one question about whether the questionnaire was completed with help or alone. Mann-Whitney tests were used to compare POS item scores by patient awareness. Of the 91 patients who participated in the study, 41% knew they had cancer and 9% were believed to be aware that they were dying. The most burdensome problems recorded on the POS were wasted time on appointments (70% of patients scored 3 or 4), pain (42%), patient anxiety (39%), and family anxiety (37%). Those patients who were aware of their diagnosis had statistically significantly better scores with respect to symptoms, patient anxiety, receiving information, and receiving support from family and friends. This study adds to knowledge about characteristics of terminal cancer patients in Cuba and the factors contributing to patient burden. It is the first study to explore the palliative care needs of Cuban patients with advanced cancer. An association has been demonstrated between patient knowledge and quality of life in Cuba, a setting where disclosure is contrary to current clinical practice.     

Coping with palliative chemotherapy

Comparatively little is known about how patients with advanced cancer cope with palliative chemotherapy. This study uses grounded theory to analyse the coping responses of 24 women with advanced breast or ovarian cancer. Half the sample received chemotherapy at home, and the remainder were treated in hospital. The results suggest that four predominant coping styles are used; think positive/fighter (n = 8), acceptance (n = 8), fearfulness (n = 5) and hopelessness (n = 3). In addition, a range of coping strategies that reduced the threat of chemotherapy are identified. The findings have implications for the provision of quality patient care in palliative therapy, especially in relation to individualizing patient education.     

Psychosocial problems in cancer care: a brief review of common problems

Worldwide the number of cancer cases continues to increase. Newly diagnosed patients often face more advanced and aggressive therapy as medical advances attempt to provide better survival outcomes. Success in part from improvements of treatment and from early diagnosis means that more cancer patients are living longer with the diagnosis. Given these facts, the following review provides a selective examination of the literature related to treatment problems. In addition, common problems of anxiety, depression, psychosexual and communications issues are examined. The uses of psychological interventions are briefly discussed, and approaches in which mental health nurses in cancer care can contribute to improvements in patient wellbeing are highlighted.     

Differences in assessment of symptoms and quality of life between patients with advanced cancer and their specialist palliative care nurses in a home care setting

This study examined differences in the assessment of symptoms and quality of life (QoL) between patients with advanced cancer living at home and their specialist palliative care nurses. Nurses introduced a recently validated outcome measure, the Palliative Care Outcome Scale (POS), to patients referred to their hospice at their first or second home visit. The POS has two components: a patient questionnaire mirrored almost exactly by a staff questionnaire, which are both completed independently. The POS contains 10 core questions examining aspects of symptom control and QoL. Of the 338 patients referred during the study period, 174 (51%) were eligible for inclusion in the study. Of these, 55 (32%) pairs of patient and nurse questionnaires were returned and suitable for assessment. Not all questionnaires were returned by nurse and patient to form a matched pair. There was good agreement and correlation between patients and nurses in the assessment of pain and symptom control. However, important differences were found in other areas explored including anxiety levels of patients and their families, personal thoughts, practical matters and information received. The study confirms the importance of evaluating the needs, feelings and concerns of patients with advanced cancer cared for at home and highlights both the significance and necessity of the patient's contribution to any such assessment.     

Describing an episode of home nursing care for elderly postsurgical cancer patients

BACKGROUND: While studies have documented the beneficial effect of home care for cancer patients, the actual interventions implemented during these studies have not been well described. OBJECTIVES: Purposes of this study were to analyze interventions documented in narrative form by advanced practice nurses during a four-week episode of home care and describe intervention type, frequency, range, and variation over time in intervention emphasis and dose intensity. METHODS: Chart audits were performed on records kept for 148 postsurgical cancer patients who were assigned to the experimental group in a randomized clinical trial to evaluate the effect of home care on quality of life outcomes (McCorkle et al., 2000). Interventions statements (N = 7,275) were analyzed using Grobe's (1996) Nursing Intervention Lexicon and Taxonomy. RESULTS: Teaching accounted for the highest percentage of interventions documented, followed by provision of psychological support and reassurance, determination of patient needs and nursing care requirements, assessment of current status, and indirect care. Physical care and actions to promote self-care independence were documented least frequently. Differences in nursing care were found by cancer site with the greatest diversity of interventions documented for breast cancer patients. Intervention emphasis and dose intensity varied over time, suggesting that these nurses altered their care in response to the changing needs of their patients. CONCLUSIONS: These nurses responded to complex problems and used a variety of interventions to assist patients and families in management of the illness experience. They also tailored their care to each patient's location along the illness trajectory. These findings provide beginning support for the clinical utility of Nursing Intervention Lexicon and Taxonomy as a way to quantify an episode of nursing care.     

Influencing factors of place of death among home care patients with cancer in Taiwan

Multiple factors, including personal and cultural values, physical and medical factors, and various healthcare systems' forces, influence the place of death of patients with cancer. The purpose of this retrospective chart audit study was to examine the influence of sociodemographic factors, family support, patient functioning, and care needs on the place of death for patients with cancer served by a home care program in Taiwan.Among the 264 study patients, 182 (69%) died at home and 82 (31%) died in the hospital. Significant differences were found between patients dying at home or in a hospital predominantly in the categories of patient functioning and care needs. From the multivariate logistic regression model, home care patients with cancer who were never rehospitalized, who received more home care visits, and who were referred to home care services at the greatest functionally dependent status and with pain were more likely to die at home. Overall, this model could accurately classify 78% of the place of death, which is higher than other published studies. Understanding factors that influence place of death of terminally ill patients with cancer allow healthcare professionals to modify healthcare systems and tailor effective interventions to help patients die at the place they prefer.     

Intensified primary cancer care: a randomized study of home care nurse contacts

Newly diagnosed cancer patients (n=527) were randomised to intensified primary care or a control group. Intensified primary care comprised routines to improve general practitioners' and home care nurses' possibilities to support and monitor patients, i.e. increased information from specialist care, education and supervision in cancer care. The aims of this paper are to evaluate the effects of intensified primary care on cancer patients' home care nurse contacts, and to study if patients' use of home care services 6 months after diagnosis can be predicted. The intervention resulted in a marked increase of follow-up contacts. About 90% of intensified primary care patients reported such contacts, compared to 26% of control patients. The results indicate that standard care does not routinely include follow-up contacts, not even for the oldest (80+ years) or those with advanced disease. Only 27% and 36% of these groups of control patients reported follow-ups. Logistic regression analysis identified intensified primary care as the strongest predictor for reporting a continuing contact 6 months after diagnosis. Intensified primary care patients were 14 times more likely than controls to report a such contact. The strongest predictor of a continuing contact in the intensified primary care group was high age. Patients with advanced disease were more likely than patients with non-advanced disease to report a continuing contact, and living in a rural district was positively associated with reporting a contact. A majority of the patients (70%) assessed the time for the first contact as the 'right time' and estimated that the nurse gave expected support to a very large or large extent (67%). The results suggest that routines like those implemented through intensified primary care may be an effective strategy to increase the accessibility and continuity of care, especially for elderly people and for patients with a need for long-term contacts.     

以互联网为依托的居家安宁疗护联合疼痛管理对老年晚期肝癌患者生存质量和家庭压力的影响

摘要：目的：观察以互联网为依托的居家安宁疗护联合疼痛管理对老年晚期肝癌患者生存质量和家庭压力的影响。方法：选择2020年6月-2021年5月和2021年6月-2022年5月在廊下及吕巷接受居家安宁疗护的肝癌晚期患者61例和77例分别为常规疗护组、互联网疗护组，分别予以常规居家安宁疗护联合疼痛管理，和互联网为依托的居家安宁疗护联合疼痛管理护理。在干预前、干预后3个月比较两组患者生存质量、负面情绪、睡眠、疼痛以及家庭压力。结果：干预3个月后，互联网疗护组QOL-LC量表中躯体功能、心理功能、症状/副作用、社会功能评分、SAS和SDS评分、PSQI评分、疼痛VAS评分、FDI评分均低于常规疗护组，舒适度量表中生理舒适、精神心理舒适、环境舒适三个维度各条目平均分高于常规疗护组。结论：以互联网为依托的安宁居家疗护联合疼痛管理，提高老年晚期肝癌患者生存质量、缓解患者家庭压力的重要作用。