Patients near death receiving specialized palliative home care being transferred to inpatient care - a registry study.

BACKGROUND: The majority of palliative care patients express a preference for remaining at home for as long as possible. Despite progression of disease there is a strong desire to die at home. Nonetheless, there are transfers between care settings, demonstrating a discrepancy between desired and actual place of death. AIM: To map the prevalence of patients near death undergoing specialized palliative home care and being transferred to inpatient care in Sweden. METHODS: A national retrospective cross-sectional study based on data from the Swedish Register of Palliative Care. Patients ≥ 18 years of age enrolled in specialized palliative home care with dates of death between 1 November 2015 and 31 October 2022 were included (n = 39,698). Descriptive statistics were used. RESULTS: Seven thousand three hundred eighty-three patients (18.6%), approximately 1,000 per year, were transferred to inpatient care and died within seven days of arrival. A considerable proportion of these patients died within two days after admission. The majority (73.6%) were admitted to specialized palliative inpatient care units, 22.9% to non-specialized palliative inpatient care units and 3.5% to additional care units. Transferred patients had more frequent dyspnoea (30.9% vs. 23.2%, p < 0.001), anxiety (60.2% vs. 56.5%, p < 0.001) and presence of several simultaneous symptoms was significantly more common (27.0% vs. 24.8%, p 0.001). CONCLUSION: The results show that patients admitted to specialized palliative home care in Sweden are being transferred to inpatient care near death. A notable proportion of these patients dies within two days of admission. Common features, such as symptoms and symptom burden, can be observed in the patients transferred. The study highlights a phenomenon that may be experienced by patients, relatives and healthcare personnel as a significant event in a vulnerable situation. A deeper understanding of the underlying causes of these transfers is required to ascertain whether they are compatible with good palliative care and a dignified death.

Introducing Mechanically Assisted Cough for Patients With Progressive Neurological Disease: Patient-Physical Therapist Interaction and Physical Therapist Perspective.

OBJECTIVE: The goal of this study was to explore the patient-physical therapist interaction and the physical therapist's experience of the introductory session for mechanical insufflation-exsufflation (MI-E) device treatment for patients with progressive neurological disease. METHODS: Qualitative content analysis of participant's observation of interaction between patients and physical therapists during 9 MI-E introduction sessions in different clinical care settings and 10 follow-up interviews with 6 physical therapists. RESULTS: The introduction of MI-E emerged as a process of instilling a sense of security in the patient. The process can be described in 4 steps: (1) gain understanding by being responsive to the person's whole life situation; (2) share knowledge and expectations in a respectful and permissive way; (3) introduce the device in a gentle and reciprocal interactivity; and (4) adapt to home use in an inclusive dialog with the patient and their significant others. Physical therapists described a need for assurance to instill a sense of security in the patient, implying a need for confidence, competent peers, guiding yet flexible routines, and emotional support. CONCLUSION: Physical therapists have a need to foster assurance in employing a person-centered approach to make a patient feel secure in the process of introducing MI-E treatment. Multiple modes of professional knowledge were used together with action-based and relational-based ethics to facilitate a person-centered care approach. This seems to be a promising approach for providing good care when introducing MI-E to patients. Further research is needed to explore this from the patient's perspective. IMPACT: This study added to the body of knowledge regarding MI-E treatment in relation to patients. This has direct implication, particularly for inexperienced physical therapists, for informed care for the patient during introduction. Our study also supports that person-centered care should be implemented at all levels of health care to make it possible for physical therapists to practice person-centered care.

Creating theory: Encouragement for using creativity and deduction in qualitative nursing research.

Texts about theory in nursing often refer to theory construction by using inductive methods in a rigid way. In this paper, it is instead argued that theories are created, which is in line with most philosophers of science. Theory creation is regarded as a creative process that does not follow a specific method or logic. As in any creative endeavour, the inspiration for theory creation can come from many sources, including previous research and existing theory. The main idea put forward is that deductive qualitative research approaches should play a key role in theory creation. Furthermore, there is a need to differentiate between theory creation and theory justification. A model that emphasizes the creative aspects of theory creation and theory justification using qualitative approaches is presented. The model suggests that knowledge development is a deductive trial-and-error process where theory creation is followed by testing. Scientific theory creation and justification are presented as an iterative process that is deductive in that a testable hypothesis is derived from the theory. If the hypothesis is falsified, then the theory needs modification or might be altogether wrong. Several factors can block the creative process, both in theory development and in finding ways to test a theory in the justification phase. Some of these blockers are the idea of 'building blocks' and the inductive view of science often brought forward in nursing. Other blockers include striving for consensus and adherence to existing nursing philosophies and existing theories. Research and knowledge development are creative processes, and following predefined methods is not enough to ensure scientific rigour in qualitative nursing research.

Ethical sensitivity and compassion in home care: Leaders' views.

BACKGROUND: With an increasing older population, the pressure on home care resources is growing, which makes it important to ensure the maintenance of quality care. It is known that compassion and ethical sensitivity can improve the quality of care, but little is known about care leaders' perceptions on ethical sensitivity and compassion in home care and how it is associated with staff competence and thus quality of care. AIM: The aim of the study was to explore home care leaders' perceptions of ethical sensitivity and compassion associated with care quality in home care. RESEARCH DESIGN, PARTICIPANTS, AND RESEARCH CONTEXT: A hermeneutical approach with a qualitative explorative design was used. The data consists of texts from 10 in-depth interviews with home care leaders. Content analysis was used as a method. ETHICAL CONSIDERATIONS: The study was conducted following the ethical guidelines of the Declaration of Helsinki and the Finnish Advisory Board of Research Ethics. Research ethics permission was applied for from a Research Ethics Board. FINDINGS: One overall theme and four subthemes were found. The overall theme was: "Compassion provides deeper meaning and ethical sensitivity provides means for knowing how to act". DISCUSSION: If nurses fail to be sensitive and compassionate with patients, good and high qualitative home care cannot be achieved. Ethical sensitivity and compassion can be seen as resources in home care but the organization and the care leaders need to provide the support for these to develop. CONCLUSION: This study provides an understanding of the meaning of ethical sensitivity and compassion as sources of strength and their link to quality of care in a home care context. Further studies could focus on how to build compassion and ethical sensitivity into home-based care and how to ensure adequate support for healthcare professionals' compassion and ethical sensitivity.

Patients', relatives' and nurses' experiences of palliative care on an advanced care ward in a nursing home setting in Norway.

PATIENT OR PUBLIC CONTRIBUTION: Patients, relatives and nurses were involved in this study. AIM: The aim was to explore patients', relatives' and nurses' experiences of palliative care on an advanced care ward in a nursing home setting after implementation of the Coordination Reform in Norway. DESIGN: Secondary analysis of qualitative interviews. METHODS: Data from interviews with 19 participants in a nursing home setting: severely ill older patients in palliative care, relatives and nurses. Data triangulation influenced by Miles and Huberman was used. RESULTS: The overall theme was "Being in an unfamiliar and uncaring culture leaves end-of-life patients in desperate need of holistic, person-centred and co-creative care". The main themes were: "Desire for engaging palliative care in a hopeless and lonely situation", "Patients seeking understanding of end-of-life care in an unfamiliar setting" and "Absence of sufficient palliative care and competence creates insecurity". The patients and relatives included in this study experienced an uncaring culture, limited resources and a lack of palliative care competence, which is in direct contrast to that which is delineated in directives, guidelines and recommendations. Our findings reveal the need for policymakers to be more aware of the challenges that may arise when healthcare reforms are implemented. Future research on palliative care should include patients', relatives' and nurses' perspectives.

Dealing with ethical and existential issues at end of life through co-creation.

BACKGROUND: In research on co-creation in nursing, a caring manner can be used to create opportunities for the patient to reach vital goals and thereby increase the patient's quality of life in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. Nurses must be extra sensitive to patients' and their relatives' needs with regard to ethical and existential issues and situations in home care encounters, especially at the end of life. AIM: The aim of this study was to explore nurses' experiences of dealing with ethical and existential issues through co-creation at the end of life in palliative home care. RESEARCH DESIGN, PARTICIPANTS, AND RESEARCH CONTEXT: The material consisted of texts from interviews with 12 nurses in a home care context. A hermeneutical approach was used, and the method was inspired by a thematic analysis. ETHICAL CONSIDERATIONS: Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Ethical permission to conduct the study was given from organizations that participated in this study. FINDINGS: A main theme and four subthemes emerged. The main theme was "Deep co-creative relationships are needed to manage ethical and existential issues at the end of life." A model was created to display the findings and relations between ethical issues and situations and the need for a deep trustful caring relationship to solve problems in palliative home care. DISCUSSION: Together, the themes can be considered as a tool for learning and dealing with ethical and existential issues at the end of life in home care. The themes can also be seen as a part of nurses' ethical competence within this context. CONCLUSION: The quality of life at the end of life can be improved through co-creation, despite difficult ethical and existential issues. Future research should focus on co-creation from the patients' perspective.

Ethical sensitivity and perceptiveness in palliative home care through co-creation.

BACKGROUND: In research on co-creation in nursing, a caring manner can be used to create opportunities whereby the patient's quality of life can be increased in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. To promote quality of life, nurses must be sensitive to patients' and their relatives' needs in care encounters. Co-creation can be defined as the joint creation of vital goals for patients through the process of shared knowledge between nurses, patients and their relatives. AIM: The aim of this study was to explore nurses' experiences of caring encounters and co-creation in palliative home care from an ethical perspective. RESEARCH DESIGN, PARTICIPANTS, AND RESEARCH CONTEXT: A hermeneutical approach was used. The material consisted of texts from interviews with 12 nurses in a home care context. The method was inspired by thematic analysis. ETHICAL CONSIDERATIONS: Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. FINDINGS: An overall theme, a main theme and four sub-themes emerged. Through ethical sensitivity and perceptivity, nurses can balance their actions in the moment and change their nursing care actions according to the patient's wishes through co-creation in encounters. Here the time is crucial, as the time needed is unique to each patient. DISCUSSION: The themes together can be considered prerequisites for good palliative home care. If nurses fail to be sensitive and perceptive in encounters with dying patients, good palliative home care cannot be achieved. Ethical sensitivity and perceptiveness can also be considered a part of nurses' ethical competence. CONCLUSION: Patients' dignity can be preserved through ethical sensitivity and perceptiveness, which is fundamental for good palliative care. Co-creation from patients' perspectives should be the focus of future research.

Cocreation as a Caring Phenomenon: Nurses' Experiences in Palliative Home Care.

A new concept in palliative care, cocreation, appears to be a part of caring in nursing but has not yet been explored as a caring phenomenon. The aim was to, from a caring science perspective, explore how cocreation can be experienced as a phenomenon by nurses working in palliative home care. A hermeneutical approach and thematic analysis were used. The material consisted of texts from in-depth interviews with 12 nurses in a home care context. Informed consent regarding study participation and the storage and handling of data for research purposes were sought from participants. One main theme and 4 subthemes emerged. Cocreation can be viewed as an essential part of caring and being involved in patients' health and holistic care is a profound endeavor. Further research should focus on illuminating cocreation from patients' perspectives.

Is meta-synthesis turning rich descriptions into thin reductions? A criticism of meta-aggregation as a form of qualitative synthesis.

Meta-synthesis of qualitative research can be an important way to consolidate and grow nursing knowledge and theory. However, from recent readings of such works in the nursing literature, one can observe that there is increasing use of meta-synthesis being used as a way to simply aggregate qualitative research findings in a manner claimed to be similar to quantitative meta-research while also remaining compatible with the qualitative research tradition. The aim of this paper is to discuss whether this meta-aggregation form of research has a sound epistemological foundation and should be considered a viable form of meta-synthesis. The conclusion drawn is that meta-aggregation falls short of being a sound method and is not compatible with the qualitative research philosophy. It is also concluded that meta-aggregation should not be seen as a form of qualitative meta-synthesis. Meta-synthesis is best understood as a way to re-interpret, compare and translate disparate qualitative studies using different conceptual apparatus into a consolidated knowledge of fundamental importance to nursing care practitioners. To conclude, aggregating qualitative research tends to turn rich descriptions into thin abstractions that are of little use to nursing practice knowledge and does not advance nursing science.

The theory of a co-creative process in advanced palliative home care nursing encounters: A qualitative deductive approach over time.

AIMS AND OBJECTIVES: The aim of this study was to test the theoretical conceptualization of the co-creative process in home care nursing encounters over time. METHOD AND DESIGN: This was a multiple case study with a deductive analysis of qualitative data over time, using interviews and observations collected from three cases. RESULTS: The co-creative process was complex and contained main, sub- and micro-processes. Time was important and valuable, giving the patient and relatives space to adjust the process to their own pace. Some processes were worked on more intensively in accordance with the patients' and relatives' needs, and these are considered the main-process. The further developed theory of the co-creative process and its main, sub- and microprocesses can be understood as a concretization of how good nursing care can be performed within caring relationships in the context of advanced palliative home care.

International Nursing: Caring in Nursing Leadership-A Meta-ethnography From the Nurse Leader's Perspective.

To explore and derive new conceptual understanding of nurse leaders' experiences and perceptions of caring in nursing. RESEARCH QUESTION: What is caring in nursing leadership from the nurse leaders' perspectives? There is a paucity of theoretical studies of caring in nursing leadership. Noblit and Hares interpretative meta-ethnography was chosen because of its interpretative potential for theory development. Caring in nursing leadership is a conscious movement between different "rooms" in the leader's "house" of leadership. This emerged as the metaphor that illustrates the core of caring in nursing leadership, presented in a tentative model. There are 5 relation-based rooms: The "patient room," where nurse leaders try to avoid patient suffering through their clinical presence; the "staff room," where nurse leaders trust and respect each other and facilitate dialogue; the "superior's room," where nurse leaders confirm peer relationships; the "secret room," where the leaders' strength to hang on and persist is nurtured; and the "organizational room," where limited resources are continuously being balanced. Caring in nursing leadership means nurturing and growing relationships to safeguard the best nursing care. This presupposes that leaders possess a consciousness of the different "rooms." If rooms are not given equal attention, movement stops, symbolizing that caring in leadership stops as well. One room cannot be given so much attention that others are neglected. Leaders need solid competence in nursing leadership to balance multiple demands in organizations; otherwise, their perceptiveness and the priority of "ministering to the patients" can be blurred.

Concept analysis and the building blocks of theory: misconceptions regarding theory development.

AIM: The purpose of this article is to discuss the attempts to justify concepts analysis as a way to construct theory - a notion often advocated in nursing. BACKGROUND: The notion that concepts are the building blocks or threads from which theory is constructed is often repeated. It can be found in many articles and well-known textbooks. However, this notion is seldom explained or defended. The notion of concepts as building blocks has also been questioned by several authors. However, most of these authors seem to agree to some degree that concepts are essential components from which theory is built. DESIGN: Discussion paper. DATA SOURCES: Literature was reviewed to synthesize and debate current knowledge. IMPLICATIONS FOR NURSING: Our point is that theory is not built by concepts analysis or clarification and we will show that this notion has its basis in some serious misunderstandings. We argue that concept analysis is not a part of sound scientific method and should be abandoned. CONCLUSION: The current methods of concept analysis in nursing have no foundation in philosophy of science or in language philosophy. The type of concept analysis performed in nursing is not a way to 'construct' theory. Rather, theories are formed by creative endeavour to propose a solution to a scientific and/or practical problem. The bottom line is that the current style and form of concept analysis in nursing should be abandoned in favour of methods in line with modern theory of science.

The myth of induction in qualitative nursing research.

In nursing today, it remains unclear what constitutes a good foundation for qualitative scientific inquiry. There is a tendency to define qualitative research as a form of inductive inquiry; deductive practice is seldom discussed, and when it is, this usually occurs in the context of data analysis. We will look at how the terms 'induction' and 'deduction' are used in qualitative nursing science and by qualitative research theorists, and relate these uses to the traditional definitions of these terms by Popper and other philosophers of science. We will also question the assertion that qualitative research is or should be inductive. The position we defend here is that qualitative research should use deductive methods. We also see a need to understand the difference between the creative process needed to create theory and the justification of a theory. Our position is that misunderstandings regarding the philosophy of science and the role of inductive and deductive logic and science are still harming the development of nursing theory and science. The purpose of this article is to discuss and reflect upon inductive and deductive views of science as well as inductive and deductive analyses in qualitative research. We start by describing inductive and deductive methods and logic from a philosophy of science perspective, and we examine how the concepts of induction and deduction are often described and used in qualitative methods and nursing research. Finally, we attempt to provide a theoretical perspective that reconciles the misunderstandings regarding induction and deduction. Our conclusion is that openness towards deductive thinking and testing hypotheses is needed in qualitative nursing research. We must also realize that strict induction will not create theory; to generate theory, a creative leap is needed.

Co-creating possibilities for patients in palliative care to reach vital goals--a multiple case study of home-care nursing encounters.

The patient's home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home-care nursing encounters (HCNEs) between the nurse, patient and patient's relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to explore planned HCNEs in palliative care. The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co-creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co-creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co-creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person-centered approach.

Development of nurses' abilities to reflect on how to create good caring relationships with patients in palliative care: an action research approach.

Development of nurses' abilities to reflect on how to create good caring relationships with patients in palliative care: an action research approach In this paper we present an action research process aimed at enhancing nurses' abilities to reflect on how to create good caring relationships with patients in advanced home care. Another aim was to examine the usefulness of an emerging theory, derived from results from a previous study. The request for this project to take place came from an advanced home care unit which had received complaints concerning patients in the palliative phase. The action performed was clinical supervision, structured around abilities that nurses need in order to create good caring relationships. During the action research process 42 narratives were analysed by the participating group. Three different data collections were carried out and analysed with qualitative content analysis in a triangulation procedure. The emerging theory was found to be useful and was also refined. The nurses reported that they felt strengthened and had developed their ability to reflect over good caring relationships. Some changes to practice were carried out by the participating nurses. The result also indicates that action research can be helpful in examining the usefulness of an emerging theory.

Esthetic abilities: a way to describe abilities of expert nurses in palliative home care.

AIM: The aim of this paper is to focus on the abilities needed to create the caring relation in palliative home care and to find ways to describe these abilities and skills from an esthetic perspective. BACKGROUND: Nurses in Palliative home care have to create a functioning relationship between themselves the patient and the patient's next of kin, this puts special demands on the nurse. A number of abilities, such as creativity, intuition, empathy and self-knowledge are mentioned in literature related to the caring relation. Many nursing theorists have referred to the art and esthetic of nursing when trying to describe these abilities. METHODS: Data were collected using semi-structured interviews with eight expert nurses in palliative home care. The transcribed interviews were analysed using qualitative content analyses. FINDINGS: Three main categories where found: The will to do good, Knowledge and Perceptiveness. Subcategories that can be seen as abilities where found in the main categories knowledge and perceptiveness. CONCLUSIONS: The main categories can be seen as expressions for abilities, personal qualities and skills needed to create the caring relation in palliative home care. We found interesting connections between the three main categories and the concepts of esthetics, ethics and science. We also found that nurses develop in a way, i.e. similar to an artist. RELEVANCE TO CLINICAL PRACTICE: The concepts brought forward in this paper could be used in clinical supervision and education as well as in clinical practice. If nurses think about the three aspects: Knowledge, the will to do good and perceptiveness, the chance for a positive relation between the nurse and the patient, and the patient's next of kin might increase. One could speculate that perceptiveness is a vital ability in order to achieve the expert level of nursing and that this perspective should be taken in consideration when recruiting nurses and in curriculum development.