Dignity at stake: Caring for persons with impaired autonomy.

Dignity, usually considered an essential ethical value in healthcare, is a relatively complex, multifaceted concept. However, healthcare professionals often have only a vague idea of what it means to respect dignity when providing care, especially for persons with impaired autonomy. This article focuses on two concepts of dignity, human dignity and dignity of identity, and aims to analyse how these concepts can be applied in the care for persons with impaired autonomy and in furthering the practice of respect and protection from harm. Three vignettes were designed to illustrate typical caring situations involving patients with mild to severely impaired autonomy, including patients with cognitive impairments. In situations like these, there is a risk of the patient's dignity being disrespected and violated. The vignettes were then analysed with respect to the two concepts of dignity to find out whether this approach can illuminate what is at stake in these situations and to provide an understanding of which measures could safeguard the dignity of these patients. The analysis showed that there are profound ethical challenges in the daily care of persons with impaired autonomy. We suggest that these two concepts of human dignity could help guide healthcare professionals to develop practical skills in person-centred, ethically grounded care, where the patient's wishes and needs are the starting point.

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.

Sense of Self in Alzheimer's Research Participants.

The sense of self is vulnerable in people with Alzheimer's disease (AD), and might be positively and negatively influenced by research participation. The purpose of this study was to describe how people with AD express their experience of being a research participant with respect to their sense of self. Interviews and support group conversations involving 13 people with mild and moderate AD were analyzed using qualitative content analysis. Three themes were constructed: contributing to an important cause, gaining from participating, and experiencing risks and drawbacks. Participants described contributing to research as being in line with their lifelong values and lifestyles. They expressed contentment and pride about being research participants, emphasized their positive relationships with the researchers, and described participation as a meaningful activity. When research procedures threatened their sense of self, they were able to reason about risks and decline participation.

They are still the same - family members' stories about their relatives with dementia disorders as residents in a nursing home.

In order to better understand the context of suffering from dementia disorders, greater efforts should be made to understand and identify what persons with such disorders experience when living in a nursing home. The aim of this qualitative study was to gain further understanding of how persons with dementia disorders experienced and coped with their changed life situation after being relocated to a nursing home as described by their family members' perceptions. Qualitative data were collected from ten interviews with family members and evaluated using content analysis. The main findings suggest that residents with dementia disorders largely maintained their personality intact throughout the trajectory of illness as they were able to keep their habits and interests. The local environment of the nursing home and the residents' relationships to staff were important in order to feel accepted. Four categories were discerned during the analysis: living in limbo; coming to peace; keeping old habits and relationships; and thoughts about impending death. It is reasonable to believe that old habits and interests may be preserved as the embodiment of such habits are deeply rooted and connected to a person's identity even when going through various changes and transitions in life. Therefore, to be accepted as the person you are requires care and services to specific needs, i.e. person-centeredness. Lack of understanding from staff may therefore have an adverse effect on a person's self-respect and identity. For that reason, staff needs to reflect on their attitudes and relationships as well as extending their knowledge about how to address sensitive topics such as the residents' impending death. To achieve this support from managers is pivotal. Future research should focus on support to nursing staff to further knowledge and understanding about the individual changes resident go through near the end of life.

Being a close family member of a person with dementia living in a nursing home.

AIM AND OBJECTIVE: To illuminate how family members of persons with dementia describe their own experiences, before and after placing their relative in a nursing home. BACKGROUND: In the Western world and with a growing population of older people, the number of persons with dementia increases. Family members often become carers in their own homes creating stressful and exhausting situation that eventually leads to relocating the person to a nursing home. This may lead to troubled conscience among family members. METHOD AND DESIGN: This is a qualitative study with descriptive design based on interviews with ten family members to residents with dementia at one small nursing home ward. Data were analysed using content analysis. RESULTS: Five categories were derived from data: relocating a person with dementia - a responsibility; visiting the resident - a relief or a burden; the participants taking part in and monitoring the residents' care needs; participants meeting their own needs; and thoughts about the future and resident's death. The result shows both positive and negative aspects of being a family member to persons with dementia. Family members described feeling relief as well as having a troubled conscience when placing a relative in a nursing home. They held themselves responsible for monitoring and evaluating the quality of the care. Family members expressed fearing a slow death for the person with dementia as well as for their own sake. Most felt well treated by the staff. CONCLUSION: Family members were responsible for relocating the residents to the nursing home. This in itself was found to cause feelings of moral concerns and generating troubled conscience. RELEVANCE TO CLINICAL PRACTICE: Staff at nursing homes needs to exercise family-centred care to benefit the persons with dementia, their family members and the staff themselves.

Moments of homecoming among people with advanced dementia disease in a residential care facility.

This study concerns moments of homecoming among people with advanced dementia disease living in a residential care facility. Our main finding from participant observations with nine residents was that the residents showed moments of homecoming, i.e. they alternated between verbal and/or nonverbal expressions of feeling at home and of not feeling at home. If care providers understand that they can help people with advanced dementia disease experience moments of homecoming, they can focus on aspects of care that can promote these experiences.

Reasoning about truth-telling in end-of-life care of patients with acute stroke.

BACKGROUND: Ethical problems are a universal phenomenon but rarely researched concerning patients dying from acute stroke. These patients often have a reduced consciousness from stroke onset and thereby lack ability to convey their needs and could be described as 'incompetent' decision makers regarding their own care. OBJECTIVE: The aim of the study was to deepen the understanding of stroke team members' reasoning about truth-telling in end-of-life care due to acute stroke. RESEARCH DESIGN: Qualitative study based on individual interviews utilizing combined deductive and inductive content analysis. Participants and research context: A total of 15 stroke team members working in stroke units of two associated county hospitals in western Sweden participated. Ethical considerations: The study was approved by the Regional Ethics Review Board, Gothenburg, Sweden. FINDINGS: The main findings were the team members' dynamic movement between the categories 'Truth above all' and 'Hide truth to protect'. Honesty was highly valued and considered as a reason for always telling the truth, with the argument of truth as common morality. However, the carers also argued for hiding the truth for different reasons such as not adding extra burden in the sorrow, awaiting a timely moment and not being a messenger of bad news. Withholding truth could both be seen as a way of protecting themselves from difficult conversations and to protect others. DISCUSSION: The results indicate that there are various barriers for truthfulness. Interpreted from a virtue of ethics perspective, withholding of truth might also be seen as an expression of sound judgement to put the patient's best interest first. CONCLUSION: The carers may need support in the form of supervision to be given space to reflect on their experience and thereby promote ethically justified care. Here, the multi-professional team can be of great value and contribute through inter-professional sharing of knowledge.

Feeling lonely in an unfamiliar place: older people's experiences of life close to death in a nursing home.

AIM: The aim of the study was to deepen the understanding of how older persons living in a nursing home experience life close to death. BACKGROUND: A move to and a life in a nursing home while being close to death is a reality for many older people in Sweden. Being able to express thoughts and feelings about death has been described as both crucial for sustaining personhood as well as for establishing a meaningful existence at the end of life. Important are the experiences of older people living in nursing homes who are approaching death. METHOD: Six older people were interviewed on one to four occasions. A total of 16 interviews were conducted with the participants. An interpretative approach was chosen. FINDINGS: The main interpretation, Feeling lonely in an unfamiliar place, is based on three themes (i) Waiting for death, with the subthemes death as a release and thinking of oneself as dead; (ii) Subordinate oneself to values and norms of the staff, with the subthemes feeling offended and feeling trapped; and (iii) Keep the courage up. The older people's lives were characterised by feelings of aloneness in an unfamiliar place which contributed to a sense of existential loneliness. They experienced few opportunities to discuss their thoughts of life and death, including preparations for passing away. CONCLUSION AND IMPLICATION FOR PRACTICE: It is of importance for professionals to be able to meet older people as they are and respect them as human beings in their transitions, before, during and after the move to a nursing home. It is important to find ways to support older people's wellbeing and identity near death.

Expressed Sense of Self by People With Alzheimer's Disease in a Support Group Interpreted in Terms of Agency and Communion.

The self is constructed in cooperation with other people and social context influences how people perceive and express it. People with Alzheimer's disease (AD) often receive insufficient support in constructing their preferred selves, but little is known about how they express themselves together with other people with AD. In accordance with Harré's social constructionist theory of self, this study aimed to describe how five people with mild and moderate AD express their Self 2 (i.e., their personal attributes and life histories) in a support group with a facilitator experienced in communicating with people with AD. The participants' expressions of their Self 2 were analyzed with qualitative abductive content analysis and interpreted in terms of agency and communion and a lack of agency and communion. The findings highlight the importance of supporting a sense of agency and communion when assisting people with AD in constructing their self.

Conversations between persons with dementia disease living in nursing homes and nurses--qualitative evaluation of an intervention with the validation method.

Living with dementia disease (DD) can include difficulties describing experiences of everyday lives, which can lead to withdrawal, social isolation or existential homelessness. Persons with DD living in nursing homes are mainly dependent on the nurses for establishing and maintaining relationships with those around them. It can be challenging for nurses to understand what a person with DD is trying to express and to make themselves understood in turn. The validation method is intended to facilitate communication with persons with DD, but to our knowledge, there have been no qualitative studies of how this influences persons' communication. This study aimed to illuminate the actions and reactions of persons with DD living in nursing homes in one-to-one conversations with nurses during 1 year of validation method training, as observed in videotapes. Four persons with DD were involved in videotaped conversations with four nurses who were participating in a validation method training programme. Videotapes with at least 5 months between the first and last recording were analysed and compared qualitatively. The findings are presented in four categories that were identified to various degrees in conversations at the beginning and at the end of the programme: being uninterested in or unable to answer questions, talking about more than one topic of conversation at the same time, trying to talk about what is on one's mind and speaking more freely about what is on one's mind. In the videotaped conversations at the end of the programme, the persons had the opportunity to use their remaining communication abilities. This may have been related to the development of the nurses' communication skills during the training programme, and so it is possible that persons with DD could benefit from communicating with nurses trained in the validation method.

Utilization of palliative care principles in nursing home care: Educational interventions.

OBJECTIVE: This study is part of the overarching PVIS (Palliative Care in Nursing Homes) project aimed at building competence in palliative care for nursing home staff. Our objective was to describe nursing home staff's attitudes to competence-building programs in palliative care. METHOD: Three different programs were developed by specialist staff from three local palliative care teams. In all, 852 staff at 37 nursing homes in the greater Stockholm area participated. Staff from 7 nursing homes participated in 11 focus-group discussions. Variation in size between the seven nursing homes initiated purposeful selection of staff to take part in the discussions, and descriptive content analysis was used. RESULTS: The results suggest that staff reported positive experiences as they gained new knowledge and insight into palliative care. The experiences seemed to be similar independent of the educational program design. Our results also show that staff experienced difficulties in talking about death. Enrolled nurses and care assistants felt that they carried out advanced care without the necessary theoretical and practical knowledge. Further, the results also suggest that lack of support from ward managers and insufficient collaboration and of a common language between different professions caused tension in situations involved in caring for dying people. SIGNIFICANCE OF RESULTS: Nursing home staff experienced competence-building programs in palliative care as useful. Even so, further competence is needed, as is long-term implementation strategies and development of broader communication skills among all professions working in nursing homes.

"The unpredictable death"-The last year of life for patients with advanced COPD: Relatives' stories.

OBJECTIVE: The end stage of chronic obstructive pulmonary disease (COPD) is described as prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden death or a recovery of longer or shorter duration. This makes it difficult to identify the critical junctures in order to prognosticate the progress and time of death. Patients with COPD often express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will worsen and lead to death by suffocation. The present article aimed to retrospectively describe the final year of life for patients with advanced COPD with a focus on death and dying from the perspective of relatives. METHOD: Interviews were conducted with the relatives of deceased family members who had advanced COPD. In total, 13 interviews were conducted and analyzed by means of content analysis. RESULT: All relatives described the patients as having had a peaceful death that did not correspond with the worry expressed earlier by both the patients and themselves. During the final week of life, two different patterns in the progress of the illness trajectory emerged: a temporary improvement where death was unexpected and a continued deterioration where death was inevitable. SIGNIFICANCE OF RESULTS: The patients and their relatives lived with uncertainty up until the time of death. Little support for psychosocial and existential needs was available. It is essential for the nurse to create relationships with patients and relatives that enable them to talk about dying and death on their own terms.

Social positioning by people with Alzheimer's disease in a support group.

People with Alzheimer's disease (AD) are often negatively positioned by others, resulting in difficulties upholding a positive sense of self. This might cause them to withdraw socially and apparently 'lose their minds'. Conversely, the sense of self can be strengthened with the support from others. This study aimed to describe, in accordance with positioning theory, how people with moderate AD positioned themselves and each other in a support group for people with AD. We describe five first-order positions; the project manager, the storyteller, the moral agent, the person burdened with AD, and the coping person. In the interactions that followed among the support group participants, those positions were mainly affirmed. This enabled participants to construct strong and agentic personae, and to have the severity of their illness acknowledged. Despite their language impairment participants managed to position and reposition themselves and others by assistance of the trained facilitator.

Lived experiences of women with recurring ovarian cancer.

BACKGROUND: Women with recurring ovarian cancer are living longer, due to advances in treatment options. They are now often outpatients, experiencing rapid encounters on treatment days. Whether this shift in care meets women's needs has been scarcely explored scientifically. PURPOSE OF THE STUDY: This study aimed to illuminate the phenomenon of living with recurring ovarian cancer as experienced by women in that condition. METHODS AND SAMPLE: A descriptive phenomenological method was used. Eight open-ended interviews with four women were performed approximately three and five years after the first recurrence of ovarian cancer. During these years the women had repeated clinically and radiologically verified recurrence requiring chemotherapy. KEY RESULTS: The phenomenon of living with recurring ovarian cancer meant that the women felt forced to pay attention to the failing body in order to avoid a potential breakdown. The growing limitation of their intermittent strength meant that strength had to be captured and protected. Sharing their lives with others was difficult, due to the different living conditions. The women found no space to mediate their experiences, either in close relationships or with health care professionals. But, the circumstances they lived under also generated a gratitude for the unexpected extra time. CONCLUSIONS: The findings revealed that the four women were grateful to live a while longer, but needed to share their state of being. The findings are indeed directed to health care professionals, who need to provide a more patient-centred care to meet the women's needs.

First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care.

The aim of this study was to investigate first-line nursing home managers' views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested.

Maintaining ordinariness around food: partners' experiences of everyday life with a dying person.

AIMS AND OBJECTIVES: To explore partners' experiences of everyday life in caring for a dying person with eating deficiencies at home. BACKGROUND: When a dying person receives care at home, eating deficiencies can influence everyday life for family members, who often take responsibility for the provision of food and meals. The literature reveals this to be emotionally stressful. Partners of dying persons are challenged both as caregivers and as partners who will soon lose their life companion. There is a need for studies that provide enhanced understanding about the influence of dying persons' eating deficiencies on their partners, from the perspective of everyday life. DESIGN: A qualitative design was chosen to obtain experience-based knowledge of relevance for the clinical context of palliative home care. METHODS: Nine people were purposefully selected and interviewed three-six months after the death of their partner. Data collection and analysis were guided by an interpretive descriptive method. RESULTS: The partners described experiences of how eating deficiencies brought about changes in the participants' everyday lives. Two patterns of experiences were identified: the challenge of doing the best for their dying partner around matters involving food and mealtimes, and experiences of striving to maintain ordinariness, including holding on to social values around food, despite experiences of unfamiliarity when the dying partners' habits were changed. CONCLUSION: Living close to a person who has eating deficiencies at the end of life is challenging, both from a caring perspective and for personal well-being. RELEVANCE TO CLINICAL PRACTICE: The findings can assist palliative home care teams and other healthcare professionals to give support that goes beyond giving practical advice about food. Initiating talk about the current situation around food and meals at home, by posing questions and opening the way for conversations, is suggested.

How people with Alzheimer's disease express their sense of self: analysis using Rom Harré's theory of selfhood.

The aim of this study was to use Harré's social constructionist theory of selfhood to describe how people with mild and moderate Alzheimer's disease (AD) express their sense of self. The findings show that Self 1, the embodied sense of being a person, was expressed fluently by participants through the use of first-person indexicals. Self 2, the experienced personal attributes and life narrative, had undergone changes. Those changes were not entirely for the worse; participants had also developed new skills in managing life with AD. In a lifetime perspective, those changes were minor and participants perceived themselves to be basically the same people that they were before having AD. When constructing Self 3, the social personae, participants usually described being supported by others, but sometimes described being exposed to malignant positioning. They also feared that they might become more exposed to negative attitudes as their AD progressed. However, participants were understanding towards the offensive behaviours of others.

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.

Effects of a support group programme for patients with life-threatening illness during ongoing palliative care.

BACKGROUND: Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Several studies show that family members report a lack of preparation, knowledge and the ability to handle the caregiver role, and a need for information and psychosocial support. AIM: The aim was to investigate the effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care. DESIGN: A prospective quasi-experimental design, including an intervention group and a comparison group, was used. SETTINGS/PARTICIPANTS: A support group programme was offered to family members during ongoing palliative care at three intervention settings: two specialist palliative care units and one haematology unit. A fourth setting, a specialist palliative care unit, was used for comparisons. RESULTS: Family members taking part in the support group programme significantly increased their perceptions of preparedness for caregiving, competence for caregiving, and rewards of caregiving. Hope, anxiety, depression symptoms and health showed no significant changes. CONCLUSIONS: The intervention, including a support group programme delivered to family members of patients with life-threatening illness during ongoing palliative care, proved to be effective in certain domains of caregiving. No negative outcomes were detected. The results indicate that this intervention could be implemented and delivered to family members during ongoing palliative care.

Learning about oneself through others: experiences of a group-based patient education programme about irritable bowel syndrome.

BACKGROUND: People with irritable bowel syndrome (IBS) often experience severe illness-related troubles in their everyday lives. Many persons also perceive their disease-related knowledge to be insufficient, and they feel dissatisfied with their inability to improve well-being. Previous research about patient education and IBS has emphasized biomedical outcomes of symptoms, health-promoting behaviours, coping and health-related quality of life, rather than people's experiences. AIM: To explore people's experiences of participating in a multidisciplinary group-based patient education programme about IBS and of the influence of this programme on everyday life with illness. METHODS: Focus group interviews were performed with 31 persons after their participation in the patient education programme. Interpretive description guided the inductive analysis of data. The study was approved by the local research ethics committee. FINDINGS: The analysis revealed four patterns; being part of a safe community, learning about oneself through others, understanding and controlling the body and illness as a whole, and being outside of the community. The pattern of learning about oneself through others can be described as a reciprocal activity of learning by listening to, telling and observing others. Being among similar others had created feelings among most of the focus group participants of being part of a safe community where taboo subjects related to IBS-symptoms could be outspoken. Understanding the body and illness as a whole had enhanced their ability to interpret bodily signals and to handle trouble some situations with greater self-confidence, and this regained their access to the social everyday world. CONCLUSION: The combination of reciprocal sharing of experiences and the provision of professional scientific knowledge during the patient education programme together contributed to a growing readiness to improve well-being in everyday life, for most of the participating individuals. This was based on new understandings of the body and illness as a whole and of new abilities to make knowledge-based decisions about what strategies to use in overcoming illness-related troubles.