Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underserved and rarely encountered groups in palliative care settings. Instead, they often die in care places where palliative competence is not available. In this qualitative single-case study, we explored the conditions and practices of palliative care from the perspective of staff at a Swedish support home for homeless people. Interpretive description guided the research process, and data were generated from repeated reflective conversations with staff in groups, individually, and in pairs. The findings disclose a person-centered approach to palliative care, grounded in the understanding of the person's health/illness and health literacy, and how this is related to and determinant on life as a homeless individual. Four patterns shape this approach: building trustful and family-like relationships, re-dignifying the person, re-considering communication about illness and dying, and re-defining flexible and pragmatic care solutions.
Nursing research indicates that serious illness and impending death influence the individual's self-image. Few studies define what self-image means. Thus it seems to be urgent to explore how nurses in palliative care perceive the concept of self-image, to get a deeper insight into the concept's applicability in palliative care.
To explore how nurses in palliative care perceive the concept of self-image.
Qualitative descriptive design.
In-depth interviews with 17 nurses in palliative care were analysed using phenomenography. The study gained ethical approval.
The concept of self-image was perceived as both a familiar and an unfamiliar concept. Four categories of description with a gradually increasing complexity were distinguished: Identity, Self-assessment, Social function and Self-knowledge. They represent the collective understanding of the concept and are illustrated in a 'self-image map'. The identity-category emerged as the most comprehensive one and includes the understanding of 'Who I am' in a multidimensional way.
The collective understanding of the concept of self-image include multi-dimensional aspects which not always were evident for the individual nurse. Thus, the concept of self-image needs to be more verbalised and reflected on if nurses are to be comfortable with it and adopt it in their caring context. The 'self-image map' can be used in this reflection to expand the understanding of the concept. If the multi-dimensional aspects of the concept self-image could be explored there are improved possibilities to make identity-promoting strategies visible and support person-centred care.
The aim of this study was to obtain an understanding of what it means to be a hospice volunteer in a country without a tradition of hospice or palliative volunteer care services. Ten volunteers from three different hospices in Sweden were interviewed. Their narratives were interpreted with a phenomenological hermeneutic method. Three themes were disclosed: motives for becoming involved in hospices, encountering the hospice and encountering the patient. The interpretations disclose a need for the volunteer to be affirmed as a caring person and received in fellowship at the hospice. Positive encounters with a hospice are closely related to personal growth. Volunteers feel rejected if their need for meaning and for belonging to the hospice is not satisfied. This shows that hospices need to set goals in terms of volunteer support, particularly regarding existential issues following the encounter with the hospice and the patient.
An increasing number of older people are living with incurable cancer as a chronic disease, requiring palliative care from specialized healthcare for shorter or longer periods of time. The aim of our study was to describe how they experience daily living while receiving palliative care in specialized healthcare contexts.
We conducted a qualitative research study with a phenomenological approach called "systematic text condensation." A total of 21 participants, 12 men and 9 women, aged 70-88, took part in semistructured interviews. They were recruited from two somatic hospitals in southeastern Norway.
The participants experienced a strong link to life in terms of four subthemes: to acknowledge the need for close relationships; to maintain activities of normal daily life; to provide space for existential meaning-making and to name and handle decline and loss. In addition, they reported that specialized healthcare contexts strengthened the link to life by prioritizing and providing person-centered palliative care.
Older people with incurable cancer are still strongly connected to life in their daily living. The knowledge that the potential for resilience remains despite aging and serious decline in health is considered a source of comfort for older people living with this disease. Insights into the processes of existential meaning-making and resilience are seen as useful in order to increase our understanding of how older people adapt to adversity, and how their responses may help to protect them from some of the difficulties inherent to aging. Healthcare professionals can make use of this information in treatment planning and for identification of psychosocial and sociocultural resources to support older people and to strengthen patients' life resources.
Department of Oncology-Pathology, Karolinska Institutet and The Vårdal Institute, The Swedish Institute for Health Sciences and Research and Development Department, Stockholms Sjukhem Foundation, Stockholm, Sweden. email@example.com
This paper explores how bereaved relatives experienced soft tissue massage during the first four months after the death of a family member who was in palliative cancer care.
Death of a close family member or friend is recognised as being an emotional and existential turning point in life. Previous studies emphasise need for various support strategies to assist relatives while they are grieving.
Eighteen bereaved relatives (11 women and seven men) received soft tissue massage (25 minutes, hand or foot) once a week for eight weeks. In-depth interviews were conducted after the end of the eight-week periods. Interviews were analysed using a qualitative descriptive content analysis method.
Soft tissue massage proved to be helpful and to generate feelings of consolation in the first four months of grieving. The main findings were organised into four categories: (1) a helping hand at the right time, (2) something to rely on, (3) moments of rest and (4) moments of retaining energy. The categories were then conceptualised into this theme: feelings of consolation and help in learning to restructure everyday life.
Soft tissue massage was experienced as a commendable source of consolation support during the grieving process. An assumption is that massage facilitates a transition toward rebuilding identity, but more studies in this area are needed.
Soft tissue massage appears to be a worthy, early, grieving-process support option for bereaved family members whose relatives are in palliative care.
Admission of a cancer patient to a palliative unit when near the final stage of their disease trajectory undoubtedly impacts their relatives. The aim of our study was to illuminate and interpret relatives' lived experiences of health personnel's provision of care in a palliative ward.
A phenomenological/hermeneutic approach was employed that was inspired by the philosophical tradition of Heidegger and Ricoeur and further developed by Lindseth and Nordberg. The perspectives of the narrator and the text were interpreted by highlighting relatives' views on a situation in which they have to face existential challenges. The analysis was undertaken in three steps: naïve reading, structural analysis, and comprehensive understanding, including the authors' professional experiences and theoretical background.
Six subthemes appeared: the dying person, the bubble, the sight, the cover, the provision for children's needs, and the availability of immediate help. These components were further constructed into three themes: the meaning of relating, the meaning of action, and the meaning of resources. Our comprehensive understanding of the results suggests that the most important theme is "acting with dedication and expertise."
The following aspects are crucial for relatives of cancer patients hospitalized in a palliative ward: time and existence, family dynamics, and care adjusted to the situation. Our study results led to reflections on the impact of how nurses behave when providing care to patients during the palliative phase, and how they interact with relatives in this situation. We found that cancer patients in a palliative unit most appreciate nurses who act with dedication and expertise.
A growing body of studies indicate benefits of physiotherapy for patients in palliative care, for symptom relief and wellbeing. Though physiotherapists are increasingly acknowledged as important members of palliative care teams, they are still an underutilized source and not fully recognized. The aim of this study was to explore the variety of activities described by physiotherapists in addressing the needs and problems of patients and their families in specialized palliative care settings.
Using a free-listing approach, ten physiotherapists working in eight specialized palliative care settings in Sweden described as precisely and in as much detail as possible different activities in which patients and their families were included (directly or indirectly) during 10 days. The statements were entered into NVivo and analysed using qualitative content analysis. Statements containing more than one activity were categorized per activity.
In total, 264 statements, containing 504 varied activities, were coded into seven categories: Counteracting a declining physical function; Informing, guiding and educating; Observing, assessing and evaluating; Attending to signs and symptoms; Listening, talking with and understanding; Caring for basic needs; and Organizing, planning and coordinating. In practice, however, the activities were intrinsically interwoven. The activities showed how physiotherapists aimed, through care for the body, to address patients' physical, psychological, social and existential needs, counteracting the decline in a patient's physical function and wellbeing. The activities also revealed a great variation, in relation not only to what they did, but also to their holistic and inseparable nature with regard to why, how, when, where, with whom and for whom the activities were carried out, which points towards a well-adopted person-centred palliative care approach.
The study provides hands-on descriptions of how person-centred palliative care is integrated in physiotherapists' everyday activities. Physiotherapists in specialized palliative care help patients and families to bridge the gap between their real and ideal everyday life with the aim to maximize security, autonomy and wellbeing. The concrete examples included can be used in understanding the contribution of physiotherapists to the palliative care team and inform future research interventions and outcomes.
In Sweden, individuals affected by severe stroke are treated in specialized stroke units. In these units, patients are attended by a multiprofessional team with a focus on care in the acute phase of stroke, rehabilitation phase, and palliative phase. Caring for patients with such a large variety in condition and symptoms might be an extra challenge for the team. Today, there is a lack of knowledge in team experiences of the dilemmas that appear and the consequences that emerge. Therefore, the purpose of this article was to study ethical dilemmas, different approaches, and what consequences they had among healthcare professionals working with the dying patients with stroke in acute stroke units. Forty-one healthcare professionals working in a stroke team were interviewed either in focus groups or individually. The data were transcribed verbatim and analyzed using content analysis. The ethical dilemmas that appeared were depending on "nondecisions" about palliative care or discontinuation of treatments. The lack of decision made the team members act based on their own individual skills, because of the absence of common communication tools. When a decision was made, the healthcare professionals had "problems holding to the decision." The devised and applied plans could be revalued, which was described as a setback to nondecisions again. The underlying problem and theme was "communication barriers," a consequence related to the absence of common skills and consensus among the value system. This study highlights the importance of palliative care knowledge and skills, even for patients experiencing severe stroke. To make a decision and to hold on to that is a presupposition in creating a credible care plan. However, implementing a common set of values based on palliative care with symptom control and quality of life might minimize the risk of the communication barrier that may arise and increases the ability to create a healthcare that is meaningful and dignified.
To explore how patients experience being in the hospital environment and the meaning they assign to the environment during serious illness.
A qualitative study design was applied, and the data analysis was inspired by Ricoeur's phenomenological-hermeneutic theory of interpretation. Data were collected through multiple qualitative interviews combined with observations at a teaching hospital in Denmark from May to September 2011. A total of 12 patients participated.
The findings showed that the hospital environment has a strong impact on patients' emotions and well-being. They reported that aesthetic decorations and small cozy spots for conversation or relaxation created a sense of homeliness that reinforced a positive mood and personal strength. Furthermore, being surrounded by some of their personal items or undertaking familiar tasks, patients were able to maintain a better sense of self. Maintaining at least some kind of familiar daily rhythm was important for their sense of well-being and positive emotions.
The results stress the importance of an aesthetically pleasing and homelike hospital environment as part of palliative care, since the aesthetic practice and a sense of homeliness strengthened patients' experiences of well-being, relief, and positive emotions while in a vulnerable situation. Such knowledge could encourage the development of new policies regarding appropriate care settings, which in turn could result in overall improved care during serious illness.
The aim of this study was to describe nurses' experiences (>two years) of caring for dying patients in surgical wards.
Palliative care is included in education for nurses. However, the training content varies, and nurse educators need to be committed to the curriculum regarding end-of-life situations. A lack of preparation among newly graduated nurses regarding dying and death could lead to anxiety, stress and burnout. Therefore, it is important to improve knowledge regarding end-of-life situations.
A qualitative descriptive study was carried out in two surgical wards in the southern part of Sweden. The study comprised six interviews with registered nurses and was analysed using manifest qualitative content analysis, a qualitative method that involves an inductive approach, to increase our understanding of nurses' perspectives and thoughts regarding dying patients.
The results formed one category (caring-to be involved) and three subcategories (being supportive, being frustrated and being sensitive in the caring processes). Nurses were personally affected and felt unprepared to face dying patients due to a lack of knowledge about the field of palliative care. Their experiences could be described as processes of transition from theory to practice by trial and error.
Supervision is a valuable tool for bridging the gap between theory and practice in nursing during the transition from novice to expert. Improved knowledge about palliative care during nursing education and committed nursing leadership at the ward level facilitate preparation for end-of-life situations.