Separation characterized by responsibility and guilt: Family caregivers' experiences with palliative care for a close family member with severe dementia in long-term care facilities.

AIM AND OBJECTIVES: The aim of this study was to explore family caregivers' experiences with palliative care for a close family member with severe dementia in long-term care facilities. BACKGROUND: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life. DESIGN: A qualitative design with a phenomenological approach was adopted. METHODS: In-depth interviews were performed with 10 family caregivers of residents in 3 Norwegian long-term care facilities. RESULTS: The family caregivers' experiences with palliative care for a close family member with severe dementia in long-term care facilities were characterized by responsibility and guilt. Admission to a long-term care facility became a painful relief for the family caregivers due to their experiences with the poor quality of palliative care provided. The lack of meaningful activities and unsatisfactory pain relief enhanced the feelings of responsibility and guilt among the family caregivers. Despite the feelings of insecurity regarding the treatment and care given during the early phase of the stay, the family caregivers observed that their close family member received high-quality palliative care during the terminal phase. The family caregivers wanted to be involved in the care and treatment, but some felt that it became a heavy responsibility to participate in ethical decision-making concerning life-prolonging treatment. CONCLUSIONS: The family caregivers experienced ongoing responsibility for their close family members due to painful experiences with the poor quality of the palliative care provided. When their expectations regarding the quality of care were not met, the palliative care that was offered increased their feeling of guilt in an already high-pressure situation characterized by mistrust.

A complex reminding: The ethics of poetry writing in dementia care.

Interest in the potential benefits of poetry writing in dementia care has been increasing. Various practical projects, as well as research articles, have highlighted how poetry can acknowledge the words of persons with dementia, and increase well-being. In this article, the authors present a poetry writing project in dementia care in Norway, and argue for how poetry as a genre involves lyrical as well as ethical aspects. The aim of this article is to show how linguistic and ethical sensibility can illuminate the poetic possibilities of the everyday language of persons with dementia. Through a close reading of selected poems from the poetry writing project, the authors show how poetry writing can give an increased understanding of the resources in the everyday language of persons living with dementia. Poetry can open up alternative forms of expression and agency, and thereby support the narrative citizenship of persons with dementia.

Finding ways to carry on: stories of vulnerability in chronic illness.

Purpose: In this study, we explore the lived experiences of chronic illness in four groups of patients; children with asthma, adolescents with diabetes, young adults with depression, and adult patients with chronic, obstructive pulmonary disease (COPD). Persons living with chronic illness are often designated as vulnerable. This study builds on the assumption that being vulnerable belongs to being human, and that vulnerability also might entail strength and possibilities for growth. Methods: A narrative analysis was undertaken to illuminate how experiences of vulnerability were narrated across the four patient groups, presenting four individual stories, one from each of the patient groups. Results/conclusion: The stories illuminate how living with a chronic illness implies differing capabilities and capacities dependent on the specific condition. At the same time the stories point to how various abilities and challenges in living with chronic illness can be alleviated or seen as resources. Considered together, the stories underscore how ´finding ways to carry on´ in chronic illness requires interpretational work. By calling upon resources among significant others, in the surroundings and in oneself, the narrator can find ways of interpreting living with chronic illness that might open towards a hopeful future.

Perceived barriers and facilitators in providing palliative care for people with severe dementia: the healthcare professionals' experiences.

BACKGROUND: Dementia has become a major public health issue worldwide due to its rapidly increasing prevalence and an increasing number of dementia-related deaths in long-term care facilities. The aim of this study was to examine health professionals' experiences of potential barriers and facilitators in providing palliative care for people with severe dementia in long-term care facilities. METHODS: This was a qualitative descriptive study. The data were collected from four focus groups and 20 individual in-depth interviews with healthcare professionals from four Norwegian nursing homes. The data were analysed by thematic text analysis, as described by Braun and Clarke. RESULTS: The major findings indicate that healthcare professionals experience a lack of continuity as the main barrier to facilitating palliative care. Time pressure and increased efficiency requirements especially affect the weakest and bedridden residents with dementia. The healthcare professionals feel conflicted between wanting to spend more time caring for each individual resident and feeling pressure to help everyone. Although resources are scarce, dying residents are always given priority by healthcare professionals, either by the hiring of extra personnel or the reorganization of tasks in a way that facilitates someone staying with the terminal resident. Advanced care planning was highlighted as a facilitator in providing palliative care, but the extensive use of temporary staff among nurses and doctors and the relocation between the sheltered and long-term wards threaten the continuity in planning and providing palliative care. CONCLUSIONS: The findings indicate that healthcare professionals experienced several structural barriers that prevented the provision of palliative care to people with severe dementia in long-term care facilities. Increasing demands for economic rationality lead to a lack of continuity of care. Organizational changes, such as measures to increase the competence and the proportion of permanent employees and the prevention of burdensome end-of-life transitions, should be implemented to improve continuity and quality of care.

A painful experience of limited understanding: healthcare professionals' experiences with palliative care of people with severe dementia in Norwegian nursing homes.

BACKGROUND: People dying with dementia have significant healthcare needs, and palliative care, with its focus on comfort and quality of life, should be made available to these patients. The aim of this study was to explore and increase knowledge of healthcare professionals' experiences with palliative care to people with severe dementia in nursing homes. METHODS: To describe the phenomenon under investigation, we used a phenomenological research approach grounded in the philosophy of Husserl. Data were collected using in-depth interviews with 20 healthcare professionals from four Norwegian nursing homes. RESULTS: The general meaning structure of the healthcare professionals' experiences with providing palliative care to people with severe dementia is painfulness, due to their limited understanding of patients' individual modes of expression. The painfulness is illustrated by the following themes: challenges related to "reading" the patients' suffering, coming up short despite occasional success, handing the patients over to strangers, and disagreeing on the patients' best interests. The healthcare professionals struggled to understand patients by "reading" their suffering. Occasionally, they succeeded and were able to calm the patients, but they often had the feeling of coming up short in situations related to pain relief and coping with behavioural symptoms, such as aggression and rejection of care. They also found it painful when the weakest patients were moved from the sheltered unit to a somatic long-term unit and were handed over to strangers who did not know the patients' ways of expression. Although the healthcare professionals emphasized the importance of good collaboration with the patients' relatives to ensure the best possible palliative care, they frequently found themselves in difficult situations when they disagreed with the family on the patients' best interests. CONCLUSIONS: We found healthcare professionals' experiences of providing palliative care to people with severe dementia to be painful. To be able to understand the patients better, long-term familiarity and knowledge of how to "read" and observe patients with severe dementia are necessary. Openness in cooperation with the patients' relatives and with the professional team may increase healthcare professionals' understanding of the patients' situations and hence improve the quality of care.

'Theatre as an eye-opener': How theatre may contribute to knowledge about living close to persons with dementia.

The aim of the study was to show how theatre may yield insight into living close to persons with dementia. Six focus group interviews with health providers and close relatives were conducted. The informants, recruited by the local dementia associations and nursing homes in three Norwegian towns, were invited to see the theatre play Our Wonderful World. Further, they were asked to send written reflections from during and after the play to the project group within one week. Transcripts from the interviews and reflection notes were analysed inspired by a phenomenological approach. After discussion and reflection on each member's preliminary themes, a common meaning of the informants' experiences were gained. Informants gave written informed consent and The Norwegian Social Sciences Data Services assessed the project. Data showed that the two groups of informants had different knowledge of the patients' earlier life and thoughts of the future. They became aware of how different they experienced their responsibility, and they expressed different attitudes as to how open one should be about the illness. Findings are summarised in four themes: Bright memories and sombre views of the future, Life responsibility versus professional responsibility and Shielding versus openness. The drama creates emotional engagement that enabled the informants to transcend their personal experiences and gain new knowledge.

ICU nurses and physicians dialogue regarding patients clinical status and care options-a focus group study.

Nurses and physicians work side-by-side in the intensive care unit (ICU). Effective exchanges of patient information are essential to safe patient care in the ICU. Nurses often rate nurse-physician communication lower than physicians and report that it is difficult to speak up, that disagreements are not resolved and that their input is not well received. Therefore, this study explored nurses' dialogue with physicians regarding patients' clinical status and the prerequisites for effective and accurate exchanges of information. We adopted a qualitative approach, conducting three focus group discussions with five to six nurses and physicians each (14 total). Two themes emerged. The first theme highlighted nurses' contributions to dialogues with physicians; nurses' ongoing observations of patients were essential to patient care discussions. The second theme addressed the prerequisites of accurate and effective dialogue regarding care options, comprising three subthemes: nurses' ability to speak up and present clinical changes, establishment of shared goal and clinical understanding, and open dialogue and willingness to listen to each other. Nurses should understand their essential role in conducting ongoing observations of patients and their right to be included in care-related decision-making processes. Physicians should be willing to listen to and include nurses' clinical observations and concerns.

Assessing changes in a patient's condition - perspectives of intensive care nurses.

AIM: To explore the phenomenon of assessing changes in patients' conditions in intensive care units from the perspectives of experienced intensive care nurses. BACKGROUND: Providing safe care for patients in intensive care units requires an awareness and perception of the signs that indicate changes in a patient's condition. Nurses in intensive care units play an essential role in preventing the deterioration of a patient's condition and in improving patient outcomes. DESIGN AND METHODS: This hermeneutic phenomenological study conducted close observations and in-depth interviews with 11 intensive care nurses. The nurses' experience ranged from 7 to 28 years in the intensive care unit. Data were collected at two intensive care units in two Norwegian university hospitals. The analysis was performed using the reflective methods of van Manen. FINDINGS: An overarching theme of 'sensitive situational attention' was identified, in which the nurses were sensitive in relation to a patient and understood the significance of a given situation. This theme was further unfolded in four subthemes: (1) being sensitive and emotionally present, (2) being systematic and concentrating, (3) being physically close to the bedside and (4) being trained and familiar with the routines. CONCLUSIONS: Nurses understand each patient's situation and foresee clinical eventualities through a sensitive and attentive way of thinking and working. This requires nurses to be present at the bedside with both their senses (sight, hearing, smell and touch) and emotions and to work in a concentrated and systematic manner. Knowledge about the unique patient exists in interplay with past experiences and medical knowledge, which are essential for nurses to understand the situation. RELEVANCE TO CLINICAL PRACTICE: Clinical practice should develop routines that enable nurses to be present at the bedside and to work in a concentrated and systematic manner. Furthermore, providing safe care requires nurses to be sensitive and attentive to each patient's unique situation.

'On one's own strength' Healthcare providers' experience with introducing Marte Meo Counselling in dementia care.

AIM: The aim of the present action research study was to investigate the healthcare providers' experiences with introducing Marte Meo Counselling (MMC) in a dementia-specific care unit. BACKGROUND: Research on the use of MMC shows that healthcare providers saw the patients' resources and needs more clearly and achieved increased awareness of their own skills. DESIGN AND METHOD: An action-oriented research including a three-phase strategy was applied: the mapping phase, the intervention phase and the evaluation phase. During the 5-month mapping phase, two researchers conducted participant observation of a total of 50 hours. The intervention phase consisted of lectures, clinical supervision in MMC and seven reflection groups and lasted 12 months. In the six-month evaluation phase, participant observation of a total of 48 hours was conducted. Four focus group interviews took place during the whole study period of 2 years. RESULTS: The staff went through a process of change described by the following themes: from challenging behaviour to challenging interaction; from generalised skills to contextualised relational care; and from personal challenges to a professional community. CONCLUSIONS: As a result of MMC, the healthcare providers realised the value of taking into account the patients' context in dementia care and of being active participants in the patients' world. The focus changed from regarding challenging behaviour as symptoms of a disorder to being a challenge to interaction. IMPLICATIONS FOR PRACTICE: Marte Meo Counselling should be combined with continuous reflection to improve healthcare providers' interaction with people who live with dementia. The reflection groups gave the caregivers an opportunity for discussions that would otherwise be impossible in their busy everyday life.

Foresight and awareness of incipient changes in a patient' clinical conditions--Perspectives of intensive care nurses.

OBJECTIVES: The aim of this study was to explore the phenomenon of becoming aware of incipient changes in patient condition from the perspectives and experiences of intensive care nurses. RESEARCH METHODOLOGY: This study involved close observations of and in-depth interviews with 11 experienced intensive care nurses. The text was analysed using a hermeneutic phenomenological method that was inspired by van Manen. SETTING: This study was undertaken at two different high-technology intensive care units (ICUs) in Norwegian university hospitals. FINDINGS: Nurses formed images of individual patients composed of signs (of changes in a patient's condition) that were sensory, measurable, and manifested as the mood of the nurse. The signs may be viewed as separate from and opposed to one another, but they are tightly interwoven and interact with one another. Care situations are powerful stimuli for the patient, and it is of great importance for nurses to become aware of signs in these situations. Nurses also ascribe that following the patient over time is important for becoming aware of signs. CONCLUSION: An awareness of incipient changes in patient clinical condition requires understanding the ever-changing dynamics of patient condition and dialogic images composed of signs. Care situations and the following of patients through shifts are essential in enabling nurses to detect these signs.

Sensory stimulation - a way of creating mutual relations in dementia care.

The overall aim of this 2-year Norwegian action research study was to improve the interaction between care workers and patients with dementia in a nursing home by means of sensory stimulation. Furthermore, the aim was to investigate how the staff experienced the interaction with patients suffering from behavioral and psychological symptoms of dementia before, under, and after introduction of sensory stimulation methods in clinical practice. An intervention program consisting of lectures and practical guiding in sensory stimulation was implemented. The care workers participated in group meetings to reflect on the progress. Focus group interviews and participant observations were conducted initially to map exciting practice, and at the end to evaluate potential changes in attitude and skills. Observation notes and interview transcripts were analyzed by means of thematic analysis which revealed a gradual emergence of person-centered care. A phenomenological life-world perspective may serve as a theoretical basis to deepen the understanding of the use of sensory stimulation.

At the mercy of others--for better or worse.

Many elderly people spend their remaining days in nursing homes and are thus affected by issues pertaining to a good life in a nursing home. The Norwegian study presented in this article aimed to gain greater knowledge and understanding of the significant factors associated with a good life in a nursing home. Qualitative in-depth interviews with six nursing home residents aged 80 to 96 years were conducted to collect data. The aim of the analysis was to identify typical aspects related to a good life in a nursing home according to descriptions provided by nursing home residents. The findings identified both physical and psychosocial elements, and the following three main themes emerged: receiving help when the body fails is good, meaningful days despite loss and limitations, and time as a friend or foe. In conclusion, our findings indicate that it is important to understand that a good life has a deeper meaning because it challenges the existential preconditions for life.

'Brightness in dark places': theatre as an arena for communicating life with dementia.

The aim of this study was to use artistic expressions on a theatrical stage for communicating life with dementia, as portrayed in literary texts and to explore whether such communication would help relatives of people suffering from dementia gain knowledge of their situation. Life with dementia was portrayed through four theatre performances with actors reading excerpts from literary texts combined with music. Relatives were invited to the performances and to participate in focus groups following the events. Analysis revealed that the participants recognized episodes in the texts and were touched. This resulted in new knowledge. The aesthetic expression was of great significance. The use of the theatre stage as an arena for communicating knowledge became a meaningful experience. The performances enabled identification with roles on the stage, created a feeling of community with the audience and contributed to an experience of dignity.

Vulnerability in health care--reflections on encounters in every day practice.

Vulnerability is a human condition and as such a constant human experience. However, patients and professional health care providers may be regarded as more vulnerable than people who do not suffer or witness suffering on a regular basis. Acquiring a deeper understanding of vulnerability would thus be of crucial importance for health care providers. This article takes as its point of departure Derek Sellman's and Havi Carel's discussion on vulnerability in this journal. Through different examples from the authors' research focusing on the interaction between health professionals and patients, existential, contextual, and relational dimensions of vulnerability are illuminated and discussed. Two main strategies in the professionals' interactions with patients are described. The strategy that aims at understanding the patients or families from the professional's own personal perspective oftentimes ends in excess attention to the professional's own reactions, thereby impairing the ability to help. The other strategy attempts to understand the patients or families from the patients' or families' own perspective. This latter strategy seems to make vulnerability bearable or even transform it into strength. Being sensitive to the vulnerability of the other may be a key to acting ethically.

Methodological problems associated with practice-close research.

Within the health professions, it is not uncommon to investigate problems in one's field of practice, but researchers who study their own field are bound to encounter both ethical and methodological problems. In this article, the authors focus on some of the challenges in what they have chosen to call practice-close research. They focus on two issues within this area: the researcher's ability to explicate his or her preconceptions and the researcher's interaction with the participants in the study. It is difficult to treat these dimensions separately, as they border on and will influence each other. The discussion in the article of methodological challenges of practice-close research is based on experiences gleaned from a study in which the first author investigated her own practice.

How can everyday practical knowledge be understood with inspiration from philosophy?

Many nursing scholars are inspired by philosophy when investigating phenomena within nursing. This paper focuses on the everyday practical knowledge of nurses. Based on an empirical project carried out in a surgical ward the authors make an attempt, with help from philosophy, at identifying and conceptualizing elements of knowledge in everyday practice. With reference to texts by Heidegger and Wittgenstein the authors investigate two dimensions of nursing knowledge: a dimension of doing and a dimension of being. These dimensions are further developed and concretized in the paper. The doing dimension is emphasized through the concepts of adapting and exploring. The being dimension has its basis in being understanding and being connected. These two dimensions constitute a form of knowledge which is mobile and flexible. This knowledge is in place in everyday situations and it works where it is supposed to work.