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.     

A systematic review of informal caregivers' needs in providing home-based end-of-life care to people with cancer

Aims. This paper presents the results of a systematic review examining the practical information needs of informal caregivers providing home‐based palliative and end‐of‐life care to people with advanced cancer. Background. Modern hospice care has led to increases in home‐based palliative care services, with informal caregivers assuming responsibility for the majority of care. In response, health policy emphasises the provision of palliative care services in which both the patient and carer receive adequate support throughout illness and death. While the emotional needs of carers have been extensively researched, their practical needs with respect to the provision of physical care are yet to receive systematic attention. Design. Systematic review. Methods. Eligible articles were identified via electronic searches of research and evidence‐based databases, hand‐searching of academic journals and searches of non‐academic grey literature websites. Quality of research was assessed via accepted guidelines for reviewing non‐randomised, observational and qualitative literature. Data were synthesised by comparing and contrasting the findings to identify prominent themes. Results. Research consistently highlights this lack of practical support, often related to inadequate information exchange. These deficits typically manifest in relatives adopting a ‘trial and error’ approach to palliative care. Informal carers request a greater quantity of practically‐focussed information, improvements in quality and increased methods of dissemination. Conclusion. Synthesis of the literature suggests that home‐based palliative care services have been insufficiently focussed on assisting informal caregivers acquire practical nursing skills. Relevance to clinical practice. Enhanced access to professional advice represents a potentially effective method of increasing carers’ confidence in their ability to undertake practical aspects of home‐based care. Evidence suggests that nurses and other health providers may better assist home‐based carers by providing the information and skills‐training necessary to facilitate this. This may necessitate the involvement of carers in the design and testing of new educational interventions.     

The lack of standard definitions in the supportive and palliative oncology literature

ContextMultiple organizations have raised concerns about the lack of standard definitions for terminology in the supportive and palliative oncology literature.ObjectivesWe aimed to determine 1) the frequency of 10 commonly used terms in the supportive and palliative oncology literature, 2) the proportion of articles that provided definitions for each term, and 3) how each term was defined.MethodsWe systematically searched MEDLINE, PubMed, PsycINFO, the Cochrane Library, Embase, ISI Web of Science, and Cumulative Index to Nursing and Allied Health Literature for original studies, review articles, and systematic reviews related to palliative care and cancer in the first six months of 2004 and 2009. We counted the number of occurrences for “palliative care,” “supportive care,” “best supportive care,” “hospice care,” “terminal care,” “end-of-life,” “terminally ill,” “goals of care,” “actively dying,” and “transition of care” in each article, reviewed them for the presence of definitions, and documented the journal characteristics.ResultsAmong the 1213 articles found, 678 (56%) were from 2009. “Palliative care” and “end-of-life” were the most frequently used terms. “Palliative care,” “end-of-life,” and “terminally ill” appeared more frequently in palliative care journals, whereas “supportive care” and “best supportive care” were used more often in oncology journals (P < 0.001). Among 35 of 601 (6%) articles with a definition for “palliative care,” there were 16 different variations (21 of 35 articles used the World Health Organization definition). “Hospice care” had 13 definitions among 13 of 151 (9%) articles. “Supportive care” and other terms were rarely defined (less than 5% of articles that used the term).ConclusionOur findings highlight the lack of definitional clarity for many important terms in the supportive and palliative oncology literature. Standard definitions are needed to improve administrative, clinical, and research operations.     

What indicators are measured by tools designed to address palliative care competence among ‘generalist’ palliative care providers? A critical literature review

Abstract

Background

There is growing evidence that generalists may lack skills and knowledge in palliative care provision. This has led to consideration of what the core competencies for palliative care provision among generalists should be.

Aim

The objective of this review was to present the best available evidence related to indicators of competence in palliative care provision.

Method

A systematic review of both qualitative and quantitative literature was undertaken. Medline, Medline in Progress, PubMed and CINAHL databases with additional hand searches of Journal of Palliative Care, Palliative Medicine, and the International Journal of Palliative Nursing were undertaken for the period 1990–2010. Hawker et al.'s checklist was utilized to select and assess data.

Results

Nineteen of the 1361 articles met the inclusion criteria. The reviewed articles suggest a number of indicators of palliative care competence including: medical knowledge/skills, perceptions of knowledge/skills, confidence in palliative care skills, attitudes/opinions towards palliative care, and experience in palliative care delivery. None of the reviewed research provided definitive evidence as to which indicators best reflect competency to practice.

Conclusion

Multiple approaches, combined in a strategy of triangulation, must be incorporated in any appraisal in order to successfully measure palliative care competence.     

Characterizing the Role of U.S. Surgeons in the Provision of Palliative Care: A Systematic Review and Mixed-Methods Meta-Synthesis

Context

The provision of palliative care varies appropriately by clinical factors such as patient age and severity of disease and also varies by provider practice and specialty. Surgical patients are persistently less likely to receive palliative care than their medical counterparts for reasons that are not clear.

Publication Trends in Thanatology: An Analysis of Leading Journals

To identify important trends in thanatology as a discipline, the authors analyzed over 1,500 articles that appeared in Death Studies and Omega over a 20-year period, coding the category of articles (e.g., theory, application, empirical research), their content focus (e.g., bereavement, death attitudes, end-of-life), and for empirical studies, their methodology (e.g., quantitative, qualitative). In general, empirical research predominates in both journals, with quantitative methods outnumbering qualitative procedures 2 to 1 across the period studied, despite an uptick in the latter methods in recent years. Purely theoretical articles, in contrast, decline in frequency. Research on grief and bereavement is the most commonly occurring (and increasing) content focus of this work, with a declining but still substantial body of basic research addressing death attitudes. Suicidology is also well represented in the corpus of articles analyzed. In contrast, publications on topics such as death education, medical ethics, and end-of-life issues occur with lower frequency, in the latter instances likely due to the submission of such work to more specialized medical journals. Differences in emphasis of Death Studies and Omega are noted, and the analysis of publication patterns is interpreted with respect to overall trends in the discipline and the culture, yielding a broad depiction of the field and some predictions regarding its possible future.     

Refining a checklist for reporting patient populations and service characteristics in hospice and palliative care research

ContextIn specialist hospice and palliative care services, variations occur in diagnoses and prognoses of subpopulations referred, service configuration, and the health systems delivering care. These three levels of variation limit the ability to generalize study findings.ObjectivesThis article reports on coding one year of palliative care research using a previously developed checklist. The aims were to 1) quantify current reporting of factors related to generalizability in specialist palliative care research; 2) review and potentially refine the checklist in light of the first aim; 3) demonstrate the feasibility of collecting these data; and 4) set out simple processes to aid researchers in reporting, and clinicians in applying, new research evidence in hospice and palliative care.MethodsA previously published checklist (five domains, 14 core subdomains, and 24 noncore subdomains) was used to code all research articles (n = 189) published in 2007 in the three leading palliative care research journals.ResultsThe most frequently reported subdomains were patient age, gender, and diagnosis; model of service delivery; and patient performance status. Data in subdomains, including time from referral to death, socioeconomic indices, and ethnicity, were rarely reported; none reported whole-of-service or whole-of-population data. In total, 2646 (189 × 14) core subdomains could have been reported. Data were provided in 28% (746/2646).ConclusionChecklists such as the Consolidated Standards of Reporting Trials evaluate study design, focusing mainly on internal validity. The proposed checklist deals with specific content of hospice and palliative care, focusing on external validity.     

Factors Associated with Congruence Between Preferred and Actual Place of Death

Congruence between preferred and actual place of death may be an essential component in terminal care. Most patients prefer a home death, but many patients do not die in their preferred location. Specialized (physician, hospice, and palliative) home care visits may increase home deaths, but factors associated with congruence have not been systematically reviewed. This study sought to review the extent of congruence reported in the literature and examine factors that may influence congruence. In July 2009, a comprehensive literature search was performed using MEDLINE, PsychInfo, CINAHL, and Web of Science. Reference lists, related articles, and the past five years of six palliative care journals were also searched. Overall congruence rates (percentage of met preferences for all locations of death) were calculated for each study using reported data to allow cross-study comparison. Eighteen articles described 30%–91% congruence. Eight specialized home care studies reported 59%–91% congruence. A physician-led home care program reported 91% congruence. Of the 10 studies without specialized home care for all patients, seven reported 56%–71% congruence and most reported unique care programs. Of the remaining three studies without specialized home care for all patients, two reported 43%–46% congruence among hospital inpatients, and one elicited patient preference “if everything were possible,” with 30% congruence. Physician support, hospice enrollment, and family support improved congruence in multiple studies. Research in this important area must consider potential sources of bias, the method of eliciting patient preference, and the absence of a single ideal place of death.     

Palliative care for all? A review of the evidence in community hospitals

The provision of palliative care in the UK has traditionally focused on people with cancer. People who are elderly, live in rural areas or have diagnoses other than cancer often have difficulty accessing palliative care services. Community hospitals could be important for those groups currently under-served. A literature review was conducted to determine the role played by community hospitals in the provision of palliative care in the U.K. Papers were identified using a keyword search of six electronic databases and hand search of five journals. Fifteen papers were identified according to inclusion and exclusion criteria. Findings indicate that many community hospitals in the UK already have the resources to counter inequalities in access to general palliative care. Much of the evidence uses quantitative methods based on small or non-representative samples and retrospective data collection approaches. Insufficient information about the populations involved meant that findings could not be fully interpreted. More prospective research using qualitative methods involving patients, carers and nurses is required to fully understand the complexities of providing palliative care in this setting.     

Existential suffering in the palliative care setting: an integrated literature review

ContextExistential and spiritual concerns in relation to palliative end-of-life care have received increasing attention over the past decade.ObjectivesTo review the literature specifically related to existential suffering in palliative care in terms of the significance of existential suffering in end-of-life care, definitions, conceptual frameworks, and interventions.MethodsA systematic approach was undertaken with the aim of identifying emerging themes in the literature. Databases using CINAHL (1980–2009), MEDLINE (1970–2009), and PsychINFO (1980–2009) and the search engine of Google Scholar were searched under the key words existential suffering, existential distress, existential pain, palliative and end of life care.ResultsThe search yielded a total of 156 articles; 32% were peer-reviewed empirical research articles, 28% were peer-reviewed theoretical articles, and 14% were reviews or opinion-based articles. After manually searching bibliographies and related reference lists, 64 articles were considered relevant and are discussed in this review. Overall analysis identifies knowledge of the following: 1) emerging themes related to existential suffering, 2) critical review of those identified themes, 3) current gaps in the research literature, and 4) recommendations for future research. Findings from this comprehensive review reveal that existential suffering and deep personal anguish at the end of life are some of the most debilitating conditions that occur in patients who are dying, and yet the way such suffering is treated in the last days is not well understood.ConclusionGiven the broad range of definitions attributed to existential suffering, palliative care clinicians may need to be mindful of their own choices and consider treatment options from a critical perspective.     

Palliative sedation: a review of the research literature

The overall aim of this paper is to systematically review the following important aspects of palliative sedation: prevalence, indications, survival, medication, food and fluid intake, decision making, attitudes of physicians, family experiences, and efficacy and safety. A thorough search of different databases was conducted for pertinent research articles published from 1966 to June 2007. The following keywords were used: end of life, sedation, terminal sedation, palliative sedation, refractory symptoms, and palliative care. Language of the articles was limited to English, French, German, and Dutch. Papers reporting solely on the sedatives used in palliative care, without explicitly reporting the prevalence or intensity of sedation, and papers not reporting on primary research (such as reviews or theoretical articles) were excluded. Methodological quality was assessed according to the criteria of Hawker et al. (2002). The search yielded 130 articles, 33.8% of which were peer-reviewed empirical research studies. Thirty-three research papers and one thesis were included in this systematic review. This review reveals that there still are many inconsistencies with regard to the prevalence, the effect of sedation, food and fluid intake, the possible life-shortening effect, and the decision-making process. Further research to clarify all of this should be based on multicenter, prospective, longitudinal, and international studies that use a uniform definition of palliative sedation, and valid and reliable instruments. Only through such research will it be possible to resolve some of the important ethical issues related to palliative sedation.     

Palliative Care in the Greater China Region: A Systematic Review of Needs,Models, and Outcomes

ContextThere is rapidly increasing need for palliative care in Greater China because of rapidly aging populations.ObjectivesThis study aimed to systematically review and appraise evidence for palliative care needs, models of care, interventions, and outcomes in Greater China.MethodsFour databases (MEDLINE, EMBASE, CINAHL, and PsycINFO) were searched, with hand searching of local journals and databases. Narrative synthesis was applied to the qualitative and quantitative evidence.ResultsNineteen qualitative studies and 47 quantitative studies were retained. With respect to care needs, nine themes were synthesized: pain control, reduced aggressive end-of-life care, truth telling, physical, emotional, and spiritual supports, and achieving preferred place of care/death. Informal caregivers expressed their needs for education and burden reduction. Health care professionals called for training and national policy support. Twenty-four studies evaluated interventions, mostly among patients with advanced cancer. Positive effects were suggested for improvements in quality of life, pain, anxiety and depression, readmission rate, and costs. Models of care evaluated were mostly specialist palliative care delivered in various settings (hospitals, residential care, and home). Outcome measures used were grouped into six categories of construct: quality of life, pain, physical assessment, psychospiritual assessment, quality of care, and implementation assessment. Limited rigorous randomized controlled trials are available to document intervention outcomes, and some problems (such as high attrition rates) reduced the strength of the evidence.ConclusionPalliative care services within Greater China should pay more attention to management of nonmalignant disease and to integration into primary services. Policy support is key to establishing culturally appropriate person-centered services.     

Nursing students’ experiences with patient death and palliative and end-of-life care: A systematic review and meta-synthesis

AimTo synthesise the experiences of nursing students encountering patient death and caring for patients under palliative care or at end-of-life and their families in clinical settingsBackgroundNurses are pivotal in caring for dying patients and families. It has been reported that nursing students feel unprepared in caring for dying patients and handling patient death. Understanding their experiences would better inform how palliative care education can be improved and how students can be better supported in clinical settings.DesignA qualitative systematic review and meta-synthesisMethodsPubMed, Embase, CINAHL, PsycINFO, ProQuest and Google Scholar were searched for peer-reviewed articles and theses/dissertations published between 1 January 2012–25 Feb 2023. Qualitative studies of any design reporting nursing students’ experiences of patient death, caring for patients under palliative care, at end-of-life, or with time-limiting diseases in clinical settings in English were included. Study quality was evaluated using the Critical Appraisal Skills Programme tool. Data were synthesised using Sandelowski and Barroso’s 2-step framework through a meta-summary using thematic analysis, which were then integrated into meta-syntheses using an event timeline.ResultsThe review included 71 studies from 26 countries (n = 1586 nursing students). The meta-summary contained 8 themes and 23 subthemes: (1) Communication experience with patients and families, (2) Satisfaction with care provided to patients and families, (3) Impact of the COVID-19 pandemic on death and dying, (4) Perceptions of death and dying, (5) Impact of death, (6) Nursing education on palliative end-of-life care, (7) Support systems and coping methods, (8) Learning outcomes. The meta-synthesis depicted nursing students' experiences before, during and after encountering dying patients, families and patient death. Suggestions for nursing faculty and clinical staff on how they could equip students with necessary skills and knowledge and support them in clinical settings were also provided.ConclusionsWhile caring for dying patients and families was beneficial to nursing students' learning and professional development, they encountered many challenges. Governments, clinical and academic nursing leaders must prioritise the integration of palliative care content into the curricula across nursing schools in face of increasing palliative and end-of-life care needs in patients. Nursing schools should ensure that students are adequately prepared by designing culturally and socioeconomically relevant curricula, integrating theoretical and experiential learning and offering students a thorough understanding of palliative and end-of-life care. Clinical staff and nursing instructors should support students emotionally and guide them in patient care.     

Introducing reflective narratives into palliative care home care education

The purpose of the research project was to determine the impact of palliative care education and the writing of a reflective narrative on nurses' self-awareness of their attitudes toward death and care of the dying. Findings support integration of narrative reflection into palliative care education as an effective teaching strategy.Only qualitative findings of a larger study are presented; quantitative results have been published in the Journal of Hospice & Palliative Nursing (Home care and hospice nurses' attitudes toward death and caring for the dying: effects of palliative care education. 2005;7[4], 212-218).     

Perspectives in palliative care

OBJECTIVES: To review the evolution of palliative care in the United States and to define the terms palliative, supportive, and end-of-life care. DATA SOURCES: Published articles, textbooks, and reports. CONCLUSION: The health care demands that will arise from our aging society will force change in the field of palliative care. IMPLICATIONS FOR NURSING PRACTICE: Nurses providing care to patients who are living and dying from advanced cancer should apply palliative interventions from diagnosis until death.     

The role of speech-language pathologists in adult palliative care

Purpose: Given minimal studies describing the role and practice of speech-language pathologists (SLPs) in adult palliative care, the aim of this review was to compile a database of research literature, examine the potential research gaps and to consider material that specifically discussed the need for and/or use of procedures and protocols for SLPs working in palliative care that would support the development of SLP palliative care guidelines.

Method: A scoping review was conducted utilising Arksey and O’Malley’s framework with the goal of exploring any key concepts and approaches utilised by SLPs in adult palliative care, plus any literature and/or recommendations regarding SLP practice in adult palliative care settings.

Result: Over 1200 articles were initially identified. Of the 1200 articles, 13 academic papers were considered relevant as they recommended, or at least suggested, the need for speech-language pathology therapy guidelines to be implemented within adult palliative care settings.

Conclusion: The main focus of these articles was on ethical considerations and clinical recommendations for SLPs. Recommendations arising from this scoping review include providing goals to support current practising SLP clinicians and developing clinical guidelines to manage swallowing and/or communication needs of people receiving palliative care.     

Research methodologies in palliative care: a bibliometric analysis

The aspiration to design and conduct high-quality research in palliative care has been an important but elusive goal. The article evaluates the nature of research methodologies presented in published research within the broad remit of palliative care. A systematic search of the Medline database between 1997 and 2006, using the keywords 'palliative care' or 'end-of-life care' and 'research methodology', identified over 318 publications. A bibliometric analysis indicates an incremental increase in published outputs per year, from 27 countries, with articles widely distributed across 108 journals. The heterogeneity of the research methodologies and the journals publishing them, present challenges in defining what constitutes 'high quality'. We argue that although this diversity leads to a lack of coherence for a single disciplinary paradigm for palliative care, there is a greater acknowledgement of the differing epistemological and theoretical frameworks used by researchers. This could be regarded as enriching our understanding of what it means to be dying in contemporary society.     

护士姑息护理态度及其影响因素的质性研究

目的了解护士照顾中晚期患者的态度及其影响因素。方法采用质性研究中现象学分析法对8例个案进行深度访谈。结果护士照顾中晚期患者态度的影响因素主要有4个方面：护士的各种不良情绪;不完善的医疗制度;专业机构和专业标准的缺乏;护士的工作特点。结论今后应加强护士应对不良情绪的培训、死亡教育及同理心的培育;尽力争取社会支持,改善医疗保险制度;制定与姑息护理相配套的规范和标准;多形式、多渠道建立姑息护理机构;减轻护士工作负担,逐步提高护士的福利待遇。