Methodological challenges in conducting instrumentation research in non-communicative palliative care patients

Well-designed, rigorously implemented instrumentation studies are essential to develop valid, reliable pain assessment tools in non-communicative (non-self-reporting) palliative care patients. When conducting a pain instrumentation study, a research team identified methodologic challenges surrounding informed consent, eligibility criteria, acute pain operational definitions, patient recruitment, missing data, and study-related training during a run-in phase at the beginning of the project and during the conduct of the study. The team dealt with these challenges through identifying root causes, implementing remedial measures, and collecting data to demonstrate improvement or resolution. Effective strategies included obtaining Institutional Review Board (IRB) approval for a waiver of informed consent, modifying eligibility criteria, ensuring that operational definitions and study procedures were consistent with clinical practice, decreasing time from screening to data collection to improve recruitment, increasing study nurse staffing by re-budgeting grant funds, focusing time and resources on high accruing clinical units, revising processes to minimize missing data, and developing detailed training for users of the instrument. With these multi-pronged solutions, the team exceeded the patient accrual target by 25% within the funding period and reduced missing data. While pain instrumentation studies in non-communicative patients have similar challenges to other palliative care studies, some of the solutions may be unique and several are applicable to other palliative care studies, particularly instrumentation research. The team's experience may also be useful for funders and IRBs.     

Methodological issues in researching palliative care nursing practice.

The purpose of this integrative review was to describe the research conducted by nurses since the mid-1990s on nursing practice in the context of palliative/end-of-life care, identify promising methodological developments as well as methodological challenges, and propose strategies to support the development of this field of nursing research. A search of databases resulted in 121 research reports published between 1995 and 2003. Studies were included if the lead author was a nurse and the focus was nursing practice or nurses' attitudes about providing palliative or end-of-life care. Relatively few studies included patients, there were limitations in the data-collection methods used, and there was a lack of studies evaluating palliative care nursing. An emphasis on the interdisciplinary nature of palliative care may be hindering nurses from examining the effectiveness of nursing interventions. Increased attention should be given to examining the efficiency and effectiveness of nursing interventions to ensure the best outcomes for patients and their families.     

Improving the organization of palliative care by implementing quality indicators and national and setting-specific interventions: Study protocol of the IMPACT project

Abstract

Background

There is a wide gap between knowledge about palliative care and its application in everyday clinical practice, affecting many patients in our ageing population. However, changing health care practice is a complex and challenging process. Therefore, the EU funded IMplementation of quality indicators in PAlliative Care sTudy (IMPACT) project aims to develop optimal implementation strategies to improve the organization of palliative care for people with cancer or with dementia in Europe.

Methods and design

The organization of palliative care in Europe will be mapped to develop and prepare strategies to improve it, and an overview of barriers and incentives regarding successful organizational changes in palliative care will be undertaken. A pre-test with a set of quality indicators (QIs), developed within the project, will be used to identify aspects of the organization of palliative care requiring change in hospitals, nursing homes, hospices, and primary care in five European countries. Based on the results of the pre-test, each setting will be invited to prioritise and improve aspects of their organization that appeared weak. The improvement objective they choose will be tailored to national and setting-specific barriers. Finally, a post-test with the same QIs will determine the effectiveness of the strategies used. An extensive process analysis will be conducted throughout the entire study.

Discussion

It is expected that the IMPACT project will provide professionals and policy makers useful tools to facilitate effective implementation of high-quality palliative cancer and dementia care in different settings in Europe.     

Priority areas for clinical research in palliative care nursing

This report highlights a number of current research issues and concerns in palliative care nursing. The aim of the study was to identify high clinical nursing research priorities in palliative care, drawing on the expertise of nine (n = 9) clinical nurse consultants currently working in this specialty. The Delphi method was used to collect and process data in the study. Thirteen high research priorities emerged which have relevance for nursing practice, patient and family care in the hospice and community care setting. In the context of this study, the concept of high priority relates to research participant consensus on the most pressing nursing research problems which require investigation to improve clinical practice. Study findings provide direction for clinical research and continuing education in palliative care which may benefit expert nurses and their patients.     

Palliative care clinical trials: how nurses are contributing to integrated, evidence-based care

The aim of this paper is to describe the emerging role of the palliative care clinical trials nurse in an era of evidence-based practice and increasing clinical trial activity in palliative care settings across Australia. An overview of the current clinical trials work is provided, with a focus on three aspects of clinical trials nursing practice that have significant implications for patients: managing the consent process, integrating clinical trials into multidisciplinary care, and establishing and building the evidence base to inform practice in palliative care settings. Clinical trials roles provide palliative care nurses with an opportunity to contribute to clinical research, help expand palliative care's evidence base, and develop their own research capabilities.     

Palliative care nursing in rural Western Australia

This article presents the findings of a study of rural palliative care nurses in Western Australia. The number of rural centres in Western Australia offering palliative care services is increasing; however, at present there is little empirical data available about the roles of the nurses involved. This study was undertaken to begin to correct this deficit. The study examined basic social processes associated with the role of rural palliative care nurses, and identifies issues that affect the nurses' professional practice. A modified grounded theory approach was used to form a conceptual framework that describes rural palliative care nursing. Theoretical sampling techniques were used to identify the six palliative care nurses working in rural Western Australia who participated in the study. Data were generated using in-depth interview and participant observation techniques. Constant comparative analysis of the data was employed to allow concepts to emerge from the data. The central theme that developed is the all-consuming nature of the rural palliative care nurse's role. Three subthemes relating to multiple roles, expectations of nurses, and coping strategies are also discussed. This research explored issues that rural palliative care nurses feel are relevant to their professional practice, and it describes the basic social processes inherent in the rural palliative care nurse's role. Recommendations for nursing research, education, administration and clinical practice are presented.     

Improving delirium recognition and assessment for people receiving inpatient palliative care: a mixed methods meta-synthesis

BackgroundDelirium is a serious acute neurocognitive condition frequently occurring for hospitalized patients, including those receiving care in specialist palliative care units. There are many delirium evidence-practice gaps in palliative care, including that the condition is under-recognized and challenging to assess.ObjectivesTo report the meta-synthesis of a research project investigating delirium epidemiology, systems and nursing practice in palliative care units.MethodsThe Delirium in Palliative Care (DePAC) project was a two-phase sequential transformative mixed methods design with knowledge translation as the theoretical framework. The project answered five different research questions about delirium epidemiology, systems of care and nursing practice in palliative care units. Data integration and metasynthesis occurred at project conclusion.ResultsThere was a moderate to high rate of delirium occurrence in palliative care unit populations; and palliative care nurses had unmet delirium knowledge needs and worked within systems and team processes that were inadequate for delirium recognition and assessment. The meta-inference of the DePAC project was that a widely-held but paradoxical view that palliative care and dying patients are different from the wider hospital population has separated them from the overall generation of delirium evidence, and contributed to the extent of practice deficiencies in palliative care units.ConclusionImproving palliative care nurses' capabilities to recognize and assess delirium will require action at the patient and family, nurse, team and system levels. A broader, hospital-wide perspective would accelerate implementation of evidence-based delirium care for people receiving palliative care, both in specialist units, and the wider hospital setting.     

Palliative care research: methodological and ethical challenges

Nursing research in palliative care has, to date, been limited. As palliative care is increasingly recognized as a nursing specialty area, it requires the scientific foundation that research provides. Palliative care clients are particularly vulnerable because of the intensity of their illnesses and the emotional impact of impending death. This article identifies and discusses ethical and methodological challenges faced by those conducting research with this population. Suggestions for strategies that may help researchers meet these challenges are included.     

An evaluation-based model for palliative care education: making a difference to practice

It has been recognized that education may be one way of improving the provision of palliative care to patients and their families. This article is the culmination of a multi-phase evaluation project that aimed to investigate the effectiveness of palliative care education provided by a hospice education network in the north west of England. Results from a study of 46 students over a three year period indicate that in order for education to be deemed effective, there are certain fundamental requirements. These include responding to the changing and individual needs of participants, competent teaching in theory and practice, and enabling students to make a difference to practice. This paper describes a model for providing palliative care education, which encompasses these fundamental requirements. It also meets the needs of stakeholder and provides evidence of improvements in clinical practice. In particular, it focuses on the challenges of implementing this model in the current climate of clinical effectiveness, evidence-based practice and value for money.     

Independent community care gerontological nursing: becoming an entrepreneur

Few nurses have the experience of developing an independent practice. This ethnographic study explores the process and challenges of becoming an entrepreneur as described by nurses developing independent practices in community care gerontologic nursing. The process included developing a legal contract, marketing strategies, and reimbursement amounts and strategies. Major barriers to implementing this role identified by the nurses included ignorance and confusion by others about their role, financial issues related to an uncertain income, time management, and legal concerns especially around delegation. These were experienced and dedicated nurses who were also risk-takers and enjoyed the independence of practicing nursing because they believed it was meant to be practiced. Suggestions for research, education, and practice are included.     

An audit of oral care practice and staff knowledge in hospital palliative care

Mouth care is considered one of the most basic of nursing activities, and palliative care patients are especially vulnerable to oral problems (Macmillan Practice Development Unit, 1995). This article describes a project on developing oral care practice and staff knowledge, by nursing staff and Macmillan nurses at a hospital in central England. A baseline audit (audit I) was carried out to examine all aspects of current oral care practice and nursing knowledge, including assessment, implementation, prescribing and evaluation of care. Oral care guidelines and a programme of ward-based teaching were then introduced. Several months later a follow-up audit (audit II) was conducted. Results showed an improvement in all aspects of oral care and staff knowledge. Additional benefits of this process included improved professional relationships and the promotion of further audits in hospital palliative care. Recommendations include the need for further nursing research into oral care to build the evidence base further. Additionally, it is suggested that nurses must recognize their important and central role in improving this aspect of palliative care. Education and training is pivotal to this process.     

Integrating an evidenced-based research intervention in the discharge of mental health clients

The purpose of this Canadian qualitative study was to explore the experiences of clinical staff who implemented a research intervention: the Transitional Discharge Model (TDM). The TDM provided mental health clients who were hospitalized with peer support and an inpatient staff member to bridge the therapeutic transitioning from hospital staff to the community care provider. Staff from three tertiary care mental health facilities in Canada identified their learning needs in regard to providing the intervention. An educational program was developed and delivered to the clinical staff to support and facilitate the implementation of the new TDM. The extent of the utilization of knowledge and implementation of the TDM varied across the three tertiary care mental health facilities. Focus groups (N=49) with clinical staff were conducted to explore various factors related to the training process as well as the challenges and benefits of implementing the TDM. Data were analyzed using Leininger's Phases of Ethnonursing Qualitative Data Analysis [Leininger, M. (2002). The theory of culture care and the ethnonursing research method. In M. Leininger & M. McFarland (eds.), Transcultural nursing: Concepts, theories, research, and practice (3rd ed.). New York: McGraw-Hill]. Findings revealed that clinical staff experienced challenges in roles and responsibilities, relationships with others, values and beliefs of clients, staff and community, resources, and the processes of care. From the findings, strategies were identified to support the integration of knowledge about the TDM into practice and to increase clinical staff's skills in implementing research interventions. These included support from others, as well as support of practice, policy, and education.     

Doing clinical research: the challenges and benefits

The need for research in practice is well documented within nursing and other health care disciplines. This acceptance is predicated on the belief that clinically applied research will inform and improve practice and health service delivery resulting in better outcomes for consumers and their families. Nurses, however, find doing clinical research challenging. This paper describes nurses' experiences of doing clinical research. The main challenges of doing clinical research arise from a culture that prioritises practice where nursing work is core business and there is the need to address immediate and short term goals. There are also problems associated with the use of research language amongst clinical nurses and ambiguity in relation to research role expectations. Lack of support and resources for doing research along with keeping up the momentum for a research project also pose significant challenges. The benefits of doing clinical nursing research include experiential learning that has the potential to lead to practice change and improved patient outcomes that are evidence based.     

The challenge of providing palliative care in the nursing home part II: internal factors

Nursing homes are increasingly becoming the place of care and site of death for growing numbers of frail older people dying of chronic progressive illnesses. Despite this increase, empirical evidence suggests that providing palliative care in nursing homes is replete with challenges. In a previous publication, the authors examined challenges external to the nursing home that influence the provision of palliative care, and which may be beyond the nursing home's control (Wowchuk et al, 2006). This paper reviews the primary internal factors identified in the literature that affect the provision of palliative care and are, to some extent, under the nursing home's control. The internal factors include: i) lack of care provider knowledge about the principles and practices of palliative care; ii) care provider attitudes and beliefs about death and dying; iii) staffing levels and lack of available time for dying residents; iv) lack of physician support; v) lack of privacy for residents and families; vi) families' expectations regarding residents' care; vii) hospitalisation of dying residents. Suggestions for practice, education and research are provided.     

Integration of Palliative Care Into a Nurse Practitioner DNP Program

The purpose of this educational project was to integrate end-of-life and palliative care into a nurse practitioner‒doctor of nursing practice course through didactic education and clinical immersion. The innovative and memorable clinical immersion in palliative care was highly rated by the majority of the students, with all students commenting on being positively impacted by observation of the family meeting. Effectiveness of the didactic and clinical immersion was analyzed with a pre/posttest and student evaluations. This project identifies methods for faculty to integrate end-of-life and palliative care into their curriculum to enhance students’ ability to deliver evidence-based and compassionate care.     

Introducing guided group reflective practice in an Irish palliative care unit

This paper describes the processes involved over one year in introducing, facilitating and evaluating a project of guided reflective practice for a group of eight palliative care nurses in Milford Care Centre, Republic of Ireland. While literature has tended to concentrate on critical discussion relating to reflection, less attention has been directed towards the organisation and facilitation of reflective processes in practice. In addressing this deficit, a detailed account of the collaborative processes and challenges involved in this project are presented. Group evaluation of the project is discussed under the following themes: understanding the process of reflective practice; the value of keeping a reflective diary; guided group reflection and moving forward. The introduction of guided reflection for palliative care nurses has afforded both the facilitators and the participants an opportunity to meet away from the clinical environment, and to work together, finding fresh insights to inform practice. The valuing and promotion of reflective processes by an organisation arguably provides a fundamental strategy to support nurses in a quality palliative care setting.     

Clinical nurse specialists in a Web-based practice environment

The clinical nurse specialists working with the Canadian Virtual Hospice (CVH) are web-based, advanced practice palliative care nursing consultants. They deal with the complexities and challenges of online communication, particularly as it relates to the sharing of information about palliative and end-of-life care with lay people and health-care professionals alike. These nurses possess a number of highly developed skills--in communication, use of evidence-based research, teaching and understanding health-care systems--that enable them to respond to questions posed by visitors to the "Ask A Professional" section of the CVH website. Although the website is administratively based in Winnipeg, Manitoba, the services of the CNSs are available to people across Canada. In this article, the authors describe how the elements of advanced practice operate within this unique delivery model.     

Barriers to implementing an integrated care pathway for the last days of life in nursing homes

AIM: this paper explores the barriers that needed to be overcome during the process of implementing an integrated care pathway for the last days of life as a way of developing quality end-of-life care in nursing homes. METHODS: an action research methodology underpinned the study. Qualitative and quantitative data were collected in eight nursing homes before, during and after the implementation of the care pathway. FINDINGS: six main barriers were identified: a lack of knowledge of palliative care drugs and control of symptoms at the end of life; lack of preparation for approaching death; not knowing when someone is dying or understanding the dying process; lack of multidisciplinary team working in nursing homes; lack of confidence in communicating about dying; some nursing homes are not ready or able to change. These findings highlight a functional 'rehabilitative' culture that may not be so appropriate in the current context of nursing home care, and one that makes implementing an integrated care pathway for the last days of life less straightforward than in other settings. CONCLUSION: it cannot be presumed that the implementation of a care pathway for the last days of life in nursing homes is straightforward. This study suggests that an action research framework was extremely useful in highlighting and overcoming some obstacles when developing evidence-based practice. Action at both local and public policy level is required to fully address barriers that prevent quality end-of-life care in nursing homes.     

Research and Practice in an Academic Community Nursing Center

Purpose: To identify issues and describe strategies used in developing a successful program of clinical research focused on the vulnerale populations served by one urban academic nursing center. Academic community nursing centers provide ideal settings to implement programs of research. Understanding the challenges when integrating research into these practices and the strategies used is important.
Setting and Scope: The University of Wisconsin-Milwaukee Silver Spring Community Nursing Center has provided primary health care services to a low-income urban population since 1987. A team of advanced practice nurse clinicians, community health nurses, and other health care professionals and community residents implemented a broad range of innovative, community-focused, clinical inteventions that are routinely studied throughan integrated program of nursing research. Their strategies for research implementation are analyzed.
Conclusions and Implications: Factors affecting the integration of research into the center include (a) community mistrust, (b) the need for participatory recruitment strategies, and (c) the need for multiple data collection methods. Meeting these challenges requires that research agendas and methods are consonant with community goals. The inclusion of clinicians, other providers, and community residents as active members of research teams is critical to success. Reframing research and practice roles in terms of team effort that incorporates the community can strengthen research and practice-and benefit professionals and the populations they serve.     

Negotiating relational practice patterns in palliative home care

Providing palliative care in the home presents a variety of challenges for nurses and other care providers. As part of a focused ethnographic study examining client/caregiver/care-provider relationships within the socio-cultural context of home-based palliative care, this paper describes the provision of palliative care to Canadian seniors with advanced cancer from the perspective of nurses. Data were collected through in-depth interviews (n=19) with three palliative care nurses and participant observations in four households over a six-to-eight-month period. Home-based palliative care nursing was depicted in this study as a dialectical experience, revealing three relational practice patterns: making time-forfeiting time, connecting-withdrawing, and enabling-disabling. Nurses attempted to negotiate the tensions between these opposing approaches to palliative care. Study findings suggest that the sociocultural context of palliative care is not conducive to high-quality palliative care and provide several insights related to future directions for practice, policy, and research.