Using undergraduate nursing students as mediators in a knowledge transfer programme for care for patients with advanced cancer.

Nursing today faces numerous challenges. Societal changes lead to reorganization of health care, changing workloads with sicker patients in hospital and home care, and limited economic resources. The increasing and changing nature of knowledge needed for expert care provision challenges nurses to continually update their competencies. These are issues demanding proactive and dynamic changes in the way nurses conceive their mandates and practice. The aim of the action-research project presented here was to foster improved quality of care for patients with advanced cancer through collaborative endeavours integrating cancer nursing clinical practice, research and education in a knowledge exchange programme. The programme was based on input about caregiving needs from multi-professional staff caring for patients with advanced cancer in a variety of healthcare settings. Undergraduate baccalaureate nursing students were then engaged in literature studies to help address these needs. Results of the studies were communicated back to the involved clinicians in a variety of ways. In this paper, we discuss what we have experienced as opportunities and obstacles in conducting the project, based on our reflections and external evaluations. This is linked to a broader discussion of ways of integrating cancer nursing research, education and practice.

Development of a theoretical framework describing relatives' involvement in palliative care.

BACKGROUND: The present study is based on four earlier studies in which the authors classified the relative's involvement in palliative care into different categories and described the involvement as "involvement in the light" or "involvement in the dark". AIM: The aim of the study was to develop a theoretical framework concerning the involvement of relatives based on an in-depth analysis of the results of the four earlier studies. METHOD: Walker & Avant's (1995) strategies for theory construction were used for development of the framework. A number of different concepts, assumptions and statements about relatives' involvement were penetrated in an in-depth analysis. RESULTS: From the concepts two theoretical "blocks" of the relatives' involvement were developed and these constitute the foundation for the framework. One is based on concrete descriptions of the concepts "to know", "to be" and "to do". The other describes how the concepts of "involvement in the light" and "involvement in the dark" differ. Factors that promoted involvement in the light were professional care based on humanistic values, a stronger sense of coherence on the part of relatives, an appropriate illness trajectory, and other available resources. The opposite was the case for those who were involved in the dark. Five assumptions successively developed which together form the theoretical framework. CONCLUSIONS: An important conclusion that can be of importance in palliative care is that the manner in which the staff act toward the patient and relatives influence relatives' possibilities for involvement, patients' possibilities for an appropriate death, and the possibilities the staff have to give good care.

Utilization of healthcare by very-low-birthweight infants during their first year of life.

New knowledge in perinatal medicine has resulted in increased survival of very-low-birthweight (VLBW) infants. After leaving hospital, the child is seen at regular medical check-ups, but there is often a persistent worry about the child which affects the family as a whole. This can lead to an increased utilization of healthcare. Our objective was therefore to describe the utilization of healthcare by VLBW infants during their first year of life and its relation to high-risk diagnoses in the neonatal period. The study group comprised 36 infants born at gestational ages of < or = 31 wk and with a birthweight of < or = 1500 g, and was compared with a control group of 36 full-term infants. Utilization of healthcare by the VLBW infants was higher than that by the control group in paediatric and ophthalmic outpatient clinics. The total number of contacts with healthcare was on average 38.7 versus 17.4. High-risk diagnoses in the neonatal period did not correlate with utilization of care, except for visits to the paediatric outpatient clinic, especially planned visits. Further studies focusing on how to support these families after leaving hospital are therefore needed.

Quality of life 20 and 30 years after surgery in patients operated on for tetralogy of Fallot and for atrial septal defect.

Follow-up studies on patients operated on for congenital heart defects have shown good anatomical results and long-term survival. To date, there have been few studies on such patients with regard to long-term psychosocial outcome and quality of life. In this study, two cohorts of patients operated on before the age of 15 years, one for tetralogy of Fallot (TOF) and the other for atrial septal defect (ASD), were investigated 20 and 30 years after operation regarding quality of life. The combined cohort had a higher educational level than average. There was no connection between quality of life and physical health as judged from the New York Heart Association classification. The TOF group rated their quality of life higher than the ASD group, but both groups had lower figures at the 30-year than at the 20-year follow-up. Fewer patients in the TOF than in the ASD group considered that their lives were affected by the heart disease. It is concluded that the severity of the heart disease is not necessarily congruent with estimated quality of live and that mild heart defects, such as ASD, can have a considerable impact on later life quality. Surprisingly few TOF patients were affected negatively, a finding which might reflect development of a specific coping strategy in these patients during childhood.

Is good 'quality of life' possible at the end of life? An explorative study of the experiences of a group of cancer patients in two different care cultures.

The purpose of this paper was to explore how a group of gravely ill patients, cared for in different care cultures, assessed their quality of life during their last month of life. The study material comprised quality of life assessments from 47 cancer patients, completed during their last month of life. Two quality of life questionnaires, the EORTC QLQ-C30 and a psychosocial well-being questionnaire, were used. The data were treated in accordance with instructions for the respective questionnaires, and the results are presented primarily as means, mostly at the group level. Assessments from patients in two different care cultures, care-orientated and cure-orientated, were compared. The results show that despite having an assessed lower quality of life in many dimensions than people in general, several patients experienced happiness and satisfaction during their last month of life. 'Cognitive functioning' and 'emotional functioning' were the dimensions that differed least from those of the general population, and 'physical functioning', 'role functioning' and 'global health status/quality of life' differed the most. 'Fatigue' showed the highest mean for the symptom scales/items. There was a tendency for those cared for in the cure-orientated care culture to report more symptoms than those in the care-orientated care culture. An exception to this was 'pain', which was reported more often by those in the care-orientated care culture. The implications of the results are discussed from different angles. The significance of knowledge concerning how patients experience their quality of life is also discussed with respect to the care and the planning of care for dying patients.

Existential support in brain tumour patients and their spouses.

UNLABELLED: Caring for patients with brain tumours raises existential questions. The aims of this study were to describe the opinions of nurses, patients and next-of-kin on existential support and how this is prioritised. PATIENTS AND METHOD: a total of 20 brain tumour patients, 16 family members and 16 nurses underwent explorative, tape-recorded, semi-structured interviews about existential issues. RESULTS: the nurses' opinions about the importance and prioritisation of existential support could be divided into four main groups: 1) religion, 2) "a diffuse picture", 3) conversation, and 4) questions of vital importance. They generally had a favourable attitude towards existential issues but thought those issues were difficult to deal with in practice due to lack of time, lack of knowledge and fear. Without exception, patients and family members were satisfied with the medical and physical treatment, but not with the existential support. They had, to a great extent, wished for existential support, and especially for the opportunity of talking about the existential threat that had arisen. Obstacles to this were thought to be due to the staff being under much stress, being afraid and unskilled. The importance of closeness and presence, which decreased existential isolation, was emphasised.

What do we know about the dying patient? Awareness as a means to improve palliative care.

With the Hospice movement palliative care has been improved in dramatic ways. But there is also evidence that although the nursing staff is aware of the medical and physical care needs, they may have insufficient knowledge about the patient as a person, which is a prerequisite for individualized patient centered care. Avery Weisman and co-workers used six questions in post-mortem sessions where the patients' terminal period was evaluated. They used the expression Psychological autopsy for this and stressed the importance of gathering information about psycho-social aspects in the end of life experience. In a hospice-related project in Sweden, Weisman's questions were transformed into the following keywords: Symptom Control, Self-determination, Social Relations, Self-image, Synthesis, and Surrender. These were used prospectively in nursing documentation as well as in follow-up sessions after death with staff and in interviews with the patients' family members. This contributed to a greater awareness of the patients' total situation at the end of life.

Being a close relative of a dying person. Development of the concepts "involvement in the light and in the dark".

The current study is based on an earlier article in which relatives' involvement in care was described as "involvement in the light" or "involvement in the dark." Involvement in the light was characterized as the relative being well informed and experiencing a meaningful involvement. The relatives involved in the dark felt uninformed, that they were "grouping around in the dark" when they tried to support the patient. The present study analyzed further the meaning of "involvement in the light" and "involvement in the dark," and investigated whether two different care cultures, the relationship with the staff, and a rapid course of illness influence the involvement of relatives. Relatives of 52 patients who died, 30 at a surgical department and 22 in a hospice ward, were interviewed after the patients' deaths. All the relatives of the patients in the hospice ward and 13 of those in the surgical department were judged to be involved in the light. Of the relatives judged to be involved in the dark, 12 either had a sick relative with a rapid course of illness or felt that the sick relative had died unexpectedly. A pattern was clearly observed: The relatives involved in the light described being met with respect, openness, sincerity, confirmation, and connection, whereas the opposite was experienced by those involved in the dark.

Patient participation in decision making at the end of life as seen by a close relative.

The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors' manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients' participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which patients, relatives and caregivers acted differed in the respective variations; this seemed either to promote or to impede the patients' opportunities of participating in the decision making. The possibility for participation seems to be context dependent and affected by many factors such as the dying patient's personality, the social network, the availability of different forms of care, cultural values, and the extent to which nurses and other caregivers of the different forms of care can and want to support the wishes of the patients and relatives in the decision-making process.

Involvement of relatives in care of the dying in different care cultures: development of a theoretical understanding.

A prerequisite for the staff to be able to guide relatives through the dying trajectory is that the staff members know what the relative wants and can do. The aim of this study was threefold: (a) to identify and categorize family members' involvement in the care of a dying relative, (b) to develop a theoretical understanding of their involvement, and (c) to discuss the congruence or incongruence between the empirical results and key concepts in Swanson's and Watson's theories of caring. The results show that the relatives' involvement could be classified into three categories: to know, to be, and to do. Good correspondence was found between these three categories and key concepts in Swanson's and Watson's theories of caring.

The last month of life: continuity, care site and place of death.

A hospice ward was opened in 1991 at the Orebro Medical Centre Hospital (OMCH) in Sweden. Shortly afterwards, a research project was started, which aimed to describe different aspects of the final period of life of a group of cancer patients. This exploratory study is part of this project and aims to assess continuity in the site of care for a group of severely ill cancer patients during the final stages of their lives, and their place of death within different cultures of care. This prospective study involved 56 adults with cancer who had been admitted to six specialized departments at OMCH. Demographic and diagnostic data, documentation of when the patients changed from one care form to another, as well as place of death were obtained. The analysis of continuity in terms of care site involved care-oriented cultures (hospice ward, hospital-based home care, primary care-based home care and nursing home) and cure-oriented cultures (acute hospital wards). Considered as a group, the patients spent one-third of their time at home during their final month of life, with or without formal caregivers. For individual patients, however, there were great variations with regard to continuity of care site and care form. A pattern was found for the type of cancer the patients had and where they were during their final month. Ten patients died in their own homes, and of the 46 who died in an institution, approximately the same number died in a care-oriented culture as in a cure-oriented culture.

Involvement of relatives in the care of the dying in different care cultures: involvement in the dark or in the light?

The aim of this prospective study was to increase existing knowledge about the involvement of relatives in care of the dying and to shed light on the relatives' sense of coherence. Six relatives were followed via qualitative interviews during the patients' final period of life and after their deaths. The patients died in different forms of care: surgical department, nursing home, inpatient hospice ward, and at home. What the relatives had in common was that they had, in different ways, followed the patient from the first symptoms, through different forms of care, up until death. Some participated very actively in the care. Relatives' involvement in care can be described as involvement in the light or involvement in the dark. Involvement in the light is based on a trusting relationship between the family and the staff. Involvement in the dark is based on insufficient interplay and collaboration, in which the relatives are not seen or acknowledged by the staff, but instead must grope around in the dark when they try to support the patient. Rapid course of illness can be a risk factor for involvement in the dark. It seems that the relatives' sense of coherence was an important factor enabling them to be involved in the light. Humanistic care can constitute a buffer, thereby increasing the possibilities for relatives to be involved in the light.

Patterns of care for patients with cancer before and after the establishment of a hospice ward.

A majority of people die in acute hospital care, in a culture of quickness primary aimed at curing. There are indications that hospice care in various forms will spread during the present decade in Sweden. The hospice philosophy contributes to a culture of slowness, where the patient is not only allowed but is encouraged to live at his own pace. As a first step in establishing for whom hospice inpatient care is the best alternative, patient flow to a newly started hospice ward was studied. All patients (n = 1464) who died at the Medical Centre Hospital with a primary diagnosis of cancer during the period of study were compared regarding place of death, diagnosis, gender, age and length of the last period of care. The year before the ward was established, 82% of patients died in acute hospital care compared with 59% during the hospice ward's third year of operation. A total of 315 patients (22%) died in the hospice ward during the study period. The percentage of these patients over the age of 80 was significantly higher (p = 0.0001), and they also had a longer continuous final period of care. More women (57%) than men (43%) were cared for at the hospice ward. The hospice ward has in this way influenced the pattern of care in the hospital.