The nursing contribution to qualitative research in palliative care 1990-1999: a critical evaluation

BACKGROUND: Qualitative research plays an important part in providing evidence for practice in nursing, and is gaining greater acceptance within medicine. However, questions remain about what criteria are most appropriate for evaluating qualitative research. To date, little systematic evaluation of qualitative research in palliative care has been conducted. AIMS: This paper is based on a larger study in which we conducted a critical review of qualitative research in palliative care from nursing, medicine, specialist palliative care, sociology, death studies, medical anthropology, and gerontology journals published between 1990 and 1999. The aim of this paper is to present an account of the strengths and weaknesses of qualitative palliative care research in nursing, using data from this review. METHODS: In the larger study, 138 papers from 50 journals were reviewed critically using a tool developed to assess both content and quality; in one part of this tool reviewers recorded open-ended comments on the strengths and weaknesses of each paper. In this paper, we present a thematic analysis of reviewers' comments on a subgroup of 67 nursing papers from the main review, together with an analysis of comments on 29 papers from a comparison group of death studies, medical anthropology, and sociology journals. Patterns of positive and negative evaluation are identified and used to generate an account of strengths and weaknesses in qualitative palliative care research in nursing. FINDINGS: Over 40% of the subgroup of papers from nursing journals received positive comments on topic and quality of writing; around 30% received positive comments on contribution to understanding, practical value, and conceptual or theoretical issues. Less than 20% received positive comments on other critical dimensions. Over 40% of nursing papers received negative comments on the link between data, analysis, and findings, other aspects of method and theoretical and conceptual issues. A higher proportion of papers in the comparison group received positive comments on conceptual and theoretical issues and contribution to understanding. CONCLUSIONS: Nearly half the nursing papers reviewed were judged to be well written or to have a well-chosen topic. However, more than 40% of papers drew negative comments about key methods-related issues. Arguably therefore efforts to improve the quality of research evidence should focus on this area.     

结直肠癌患者术后支持性照顾需求调查研究

目的：全面了解结直肠癌患者术后支持性照顾需求,为护理人员开展健康指导提供依据,也为护理管理者开展培训和继续教育提供方向。方法选择2012年3-7月在山西省肿瘤医院通过病理检查确诊的结直肠癌接受手术的161例患者,在澳大利亚Bonevski设计的癌症患者支持性照顾需求调查问卷的基础上增加未保肛患者适用的造口支持需求维度进行问卷调查,观察结直肠癌患者术后支持性照顾需求各维度的需求率和得分情况。结果患者6个维度平均需求率为79．12％,平均未满足率为78．63％。患者心理需求得分为（2．71±0．56）分,照顾与支持需求得分为（2．66±0．46）分,生理及日常生活需求为（2．25±0．67）分,健康信息需求得分为（1．94±0．67）分,性需求得分为（1．88±1．25）分,造口需求得分为（0．66±1．18）分。术后支持性照顾需求各维度得分比较差异有统计学意义（F＝867．81, P＜0．05）。结论护理人员应全面了解患者的需求,及时调整护理服务内容。护理管理者应根据患者需求进行护士的继续教育工作,才能有利于护理学科的发展。     

54例新生儿危重先天性心脏病术前发育支持护理

本文回顾了2015年1月至2017年12月复旦大学附属儿科医院新生儿重症监护室收治的54例危重先天性心脏病患儿发育支持护理实施情况,总结了危重先天性心脏病患儿发育支持护理的重点,主要包括为患儿创造有利于发育的环境、疼痛管理、以家庭为中心的护理、营养支持、发育支持性体位管理和皮肤护理等,旨在为危重先天性心脏病患儿护理提供借鉴和参考。     

Palliative care nurses' views on euthanasia

BACKGROUND: In debates on euthanasia legalization in Belgium, the voices of nurses were scarcely heard. Yet studies have shown that nurses are involved in the caring process surrounding euthanasia. Consequently, they are in a position to offer valuable ideas about this problem. For this reason, the views of these nurses are important because of their palliative expertise and their daily confrontation with dying patients. AIM: The aim of this paper is to report a study of the views of palliative care nurses about euthanasia. METHODS: A grounded theory approach was chosen, and interviews were carried out with a convenience sample of 12 palliative care nurses in Flanders (Belgium). The data were collected between December 2001 and April 2002. FINDINGS: The majority of the nurses were not a priori for or against euthanasia, and their views were largely dependent on the situation. What counted was the degree of suffering and available palliative options. Depending on the situation, we noted both resistance and acceptance towards euthanasia. The underlying arguments for resistance included respect for life and belief in the capabilities of palliative care; arguments underlying acceptance included the quality of life and respect for patient autonomy. The nurses commented that working in palliative care had a considerable influence on one's opinion about euthanasia. CONCLUSION: In light of the worldwide debate on euthanasia, it is essential to know how nurses, who are confronted with terminally ill patients every day, think about it. Knowledge of these views can also contribute to a realistic and qualified view on euthanasia itself. This can be enlightening to the personal views of caregivers working in a diverse range of care settings.     

癌症患者支持性照顾需求的研究进展

阐述癌症患者支持性照顾需求的概念及国内外研究现状,分析其影响因素,提出目前癌症患者支持性照顾需求研究中存在的不足及研究展望.     

Quality care as ethical care: a poststructural analysis of palliative and supportive district nursing care

Quality of care is a prominent discourse in modern health‐care and has previously been conceptualised in terms of ethics. In addition, the role of knowledge has been suggested as being particularly influential with regard to the nurse–patient–carer relationship. However, to date, no analyses have examined how knowledge (as an ethical concept) impinges on quality of care. Qualitative semi‐structured interviews were conducted with 26 patients with palliative and supportive care needs receiving district nursing care and thirteen of their lay carers. Poststructural discourse analysis techniques were utilised to take an ethical perspective on the current way in which quality of care is assessed and produced in health‐care. It is argued that if quality of care is to be achieved, patients and carers need to be able to redistribute and redevelop the knowledge of their services in a collaborative way that goes beyond the current ways of working. Theoretical works and extant research are then used to produce tentative suggestions about how this may be achieved.     

Being a palliative care nurse in an academic hospital: a qualitative study about nurses' perceptions of palliative care nursing

The original philosophy of palliative care emphasizes the importance of the integration of compassion and medical science. The meaning palliative care nurses assign to their relationships with patients has been described in several studies. This qualitative research was undertaken in order to elicit the way nurses working on a palliative care ward in an academic hospital perceive their role and gain insight into the problems they encounter. The findings present two different perceptions held by nurses about the nature of their work. The first, the more prominent, is 'striving to adopt a well-organized and purposeful approach as a nurse on an academic ward'; the second is 'striving to enhance the well-being of the patient'. Nurses should be supported in the development of their palliative care approach and be assisted in reflecting on their practice in terms of a model of 'reflective practice' and in the development of 'moral imagination'.     

Case study research methods in end-of-life care: reflections on three studies

AIM: This paper is an evaluation of the use of case study methods, drawing on three research studies conducted by the authors in end-of-life care and bereavement. BACKGROUND: Case study methods have their origins in social anthropology and draw on the principles of naturalistic inquiry. They have been used in a number of disciplines, including qualitative sociology, management science, education and organizational psychology for the understanding and evaluation of complex social systems. They are an appropriate research design for examining processes and outcomes in dynamic healthcare organizations, where it is important to obtain multiple perspectives. METHOD: We explore issues in case study research design, recruitment and data collection drawing on three studies conducted between 2000 and 2005 in six community hospitals, five adult hospice bereavement services and eight childhood bereavement services in the United Kingdom. Quantitative and qualitative data were collected using interviews, focus groups, observations, documentary analysis, standardized measures and questionnaires. DISCUSSION: The process of case study design is described, including building upon a clear rationale for the selection of cases, collection of data, preparation of single case reports, cross-case analysis and interpretation. In a critical discussion of recruitment, we recommend identification of a key contact person at each site to facilitate access and minimize misunderstanding, disruption to clinical services and 'gate-keeping'. Three principal methods of data collection: interviews, observation and documentary data analysis form the foundation of the rich data set necessary to explore cases in their situational contexts. CONCLUSION: Case study methods may be empowering for participants because they value their experiences and reveal how their work contributes to teamwork within organizations. They can therefore be both affirming and challenging, as they may expose both conflicts and tensions.     

Striving for independence: experiences and needs of service users with life limiting conditions

Title.  Striving for independence: experiences and needs of service users with lifelimiting conditions.
Aim.  This paper is a report of a study to explore what service users with a range of life-limiting conditions identify as their key experiences and needs generally and, specifically, from health and social care services.
Background.  Whilst internationally palliative care has a primary focus on service users who have cancer, there is growing evidence that those with non-cancer life-limiting conditions have similar palliative care needs. The literature has mainly been focused on independence, choice and control at an individual level, with wider influences on the maintenance or attainment of independence ignored.
Method.  A participatory approach was used in 2003–2004, with both the researcher and a group of service users working together in all stages of the study. Twenty-five participants in receipt of support from an acute hospital, primary care, social services and a hospice took part. Face-to-face individual interviews and small discussion groups were conducted and data were analysed thematically.
Findings.  Eight different but interconnected themes were identified. Independence/dependence was an overarching theme, with negotiation between independence and dependence being evident across all themes. This theme and the influence of health and social care services on the experience of living with life-limiting conditions are the focus of this paper.
Conclusion.  Palliative care and practitioners should focus on maximizing independence at both the individual and structural levels. How services for those with life-limiting conditions are provided and relationships with health and social care staff can directly impact on an individual's experience of independence, choice and control.     

A qualitative exploration of self-reported unmet need one year after stroke

Purpose: Stroke survivors consistently report longer-term problems after stroke, suggesting their needs are not being met. We developed a questionnaire to identify stroke-survivor unmet needs. Preliminary questionnaire testing showed that despite residual impairment, nearly one third of respondents reported no/low unmet need. This qualitative study aims to gain insight into why stroke survivors report low/no unmet needs.

Method: People who self-reported zero or one unmet need were purposively sampled and semi-structured interviews were conducted with 10 participants. Identification and management of current problems were discussed and thematic analysis was undertaken.

Results: Participants did not report having unmet need. Despite this, all participants identified current issues or problems. Living with problems while reporting no/low unmet need is explained through: acceptance of changed circumstances; making comparisons with other people and circumstances; valuing pride, determination or independence; and viewing issues in the context of their expectations and experiences of services. Additionally, all participants were receiving some support.

Conclusions: Self-identification of unmet needs is complex. Further investigation could explore the factors which enable stroke survivors to appropriately identify and experience no unmet needs, and whether these could be applied to reduce unmet needs of others.

• Implications for Rehabilitation

• Despite self-reporting no/low unmet need, survivors of stroke may still be experiencing difficulties in their daily lives.

• Stroke-survivor-identified low unmet need is influenced by complex factors including: acceptance; expectations of services; and comparisons with other people, which Health and Social Care professionals have a role in understanding.

• Health professionals could assess unmet need by using tools as a guide, supported by individual conversation.

• Factors which enable some stroke survivors to appropriately identify and experience no/low unmet need could be further explored, and considered as strategies to reduce unmet needs of others.

     

宫颈癌患者支持性照顾需求的调查

目的调查宫颈癌患者治疗期间支持性照顾需求及影响因素。方法采用癌症患者支持性照顾需求调查问卷对正在接受治疗的200例宫颈癌患者进行调查。结果宫颈癌患者支持性照顾需求各维度得分由高到低依次是心理需求、健康信息需求、支持和照顾需求、生理和日常生活需求、性需求。年龄、民族、是否知晓诊断、文化程度和发病情况是宫颈癌患者支持性照顾需求的影响因素(P0.01)。结论医护人员在临床工作中要注意宫颈癌患者文化程度、年龄和民族等差异,重视患者的需求,为患者提供针对性护理服务。     

Australian findings on Aboriginal cultural practices associated with clothing, hair, possessions and use of name of deceased persons

There is a significant cultural gap between westernized Australian and Aboriginal cultures, especially in regards to care of the dying. Thus, cultural sensitivity and respect, coupled with knowledge of the traditions and practices in respect of the death and dying, are of utmost importance in communicating with Aboriginal peoples. In order to make a contribution to furthering cultural safety in nursing practice, this article provides important insights on a wide range of Aboriginal cultural practices in relation to the clothing, hair, possessions and name of deceased persons that impact on the nursing care of the dying Aboriginal person.