First-line managers struggling to lead home care based on the individual's needs and goals - conflict between ethical principles.

PURPOSE: The purpose of this paper is to describe how first-line managers (FLMs) in home care (HC) reason about the opportunities and obstacles to lead the work according to the individual's needs and goals. DESIGN/METHODOLOGY/APPROACH: In this participatory appreciative action reflection project, eight managers within one Swedish municipality were interviewed. The data were analysed using a thematic analysis. FINDINGS: The results showed a polarization between two different systems that FLMs struggle to balance when attempting to lead HC that adapts to the needs and goals of individuals. One system was represented by the possibilities of a humane system, with human capital in the form of the individual, older persons and the co-workers in HC. The second system was represented by obstacles in the form of the economic needs of the organization in which the individual receiving HC often felt forgotten. In this system, the organization's needs and goals governed, with FLMs needing to adapt to the cost-effectiveness principle and keep a balanced budget. The managers had to balance an ethical conflict of values between the human value and needs-solidarity principles, with that of the cost-effectiveness principle. ORIGINALITY/VALUE: The FLMs lack the opportunity to lead HC according to the needs and goals of the individuals receiving HC. There is a need for consensus and a value-based leadership model based on ethical principles such as the principles of human value and needs-solidarity to lead the HC according to the individual's needs and goals.

Nurse assistants' experiences and knowledge of how they create a meaningful daily life for older persons receiving municipal home healthcare.

AIMS AND OBJECTIVES: To explore nurse assistants' experiences and knowledge of how they create a meaningful daily life for older people receiving municipal home healthcare. DESIGN: A participatory appreciative action reflection approach. METHODS: Interviews, participant observations and informal conversations with 23 nurse assistants in municipal home healthcare generated the data. A thematic analysis was used. RESULTS: Two main themes were developed. The first main theme, building a reciprocal relationship, was structured by three subthemes: To strengthen the older person's self-esteem, to co-create care and to create equality. The second main theme, creating meaning, was structured by two subthemes: To create closeness and to receive appreciation. The two main themes are each other's prerequisite. Nursing assistants' building reciprocal relationships gives meaning; through the meaning, reciprocal relationships are achieved, and by that, meaningful daily lives for both the older people and the nurse assistants. CONCLUSION: Nurse assistants built a reciprocal relationship both for the older people and for the nurse assistant. This contributes to create a meaningful daily life for the older people. The older person was the main character, and it seems that the nurse assistants apply person-centred care, which can represent a shared common vision that can be used in the encounter.

We have to turn a transatlantic liner-Leaders' perspectives on creating a meaningful life for older persons receiving municipal care.

AIMS: To describe leaders' perspectives on what is important to create a meaningful daily life for older persons receiving municipal elderly care. DESIGN: This study combined the Participatory Appreciative Action Reflection approach and qualitative methods. METHODS: Focus Group Discussions were performed with eighty leaders that was analysed with qualitative content analysis. RESULTS: One overall theme emerged "We have to turn a transatlantic liner". The leaders proposed a need to change from an institutional care to a more person-centered care approach on all levels of the healthcare system. This meant that everyone in the organization needed to think outside the box and find new ways to provide care to older persons. They needed to hire the right persons with the right values and knowledge. The leaders would need to provide for and support staff empowerment. There was also a need to see the older person and their relatives as co-participants. No Patient or Public Contribution.

Individual goal-setting in municipal homecare: A participatory appreciative action and reflection study.

Background: There is a need for structural change in municipal homecare to shift power to older persons and to center the individuals in need. To make this change, the individual older persons should have enough self-determination to formulate their own individual homecare goals. Our aim was to explore how stakeholders reason about individual goal-setting in homecare. Design and methods: We theoretically and methodologically used a participatory appreciative action and reflection (PAAR) design. The stakeholders, that is, the older persons, the older persons' relatives, and the multi-professional team, were seen as co-researchers. Data were collected between 2019 and 2020 through in depth-interviews, focus group discussions, and reference groups. The data were analyzed using thematic analysis. Results: We learned from the stakeholders that it was a struggle to sustain the individual's goal to continue life as usual, that is, being an ordinary human being with an ordinary everyday life and maintaining individual roles. The individual wants to improve health, be active, and enjoying life. The individuals were struggling against the homecare organization, which tended to overshadow the individual's goals. The individual's goals fall under several legal jurisdictions and come to be overshadowed by the professionals' dominant goal. The organization is rigid, with finances and resources creating the framework. Conclusion: We learned that older persons receiving homecare must have the same rights as other citizens in society, which is in line with public health goals.

Core values and local guarantees of dignity in the care of older persons - Application, obstacles and further actions.

BACKGROUND AND AIM: Due to reported shortcomings in elderly care in Sweden, the government has introduced national guidelines to establish core values and guarantees of dignity. With a bottom-up perspective, core values and local guarantees of dignity were developed using an participatory and appreciative action and reflection (PAAR) approach and implemented in municipal elderly care. The aim of this study was to evaluate the core values and local guarantees of dignity applied by the municipal healthcare staff caring for older persons. METHOD AND RESULTS: A cross-sectional descriptive design study using a questionnaire was conducted one year after the implementation of core values and local guarantees of dignity in municipal elderly care. In total, 608 caregivers answered the questionnaire. The results show that the caregivers strived to apply the core values and local guarantees of dignity, but experienced obstacles from the organisation. Proposals were given to facilitate further application of the core values.

Creating conditions for a sense of security during the evenings and nights among older persons receiving home health care in ordinary housing: a participatory appreciative action and reflection study.

BACKGROUND: Today many older persons in ordinary housing receive home health care. It is stipulated that the care is to provide security; however, deficiencies in home health care are reported in many countries. It may be difficult to implement a sense of security among older persons receiving home health care in ordinary housing, especially during the evenings and nights, due to a lack of knowledge. METHODS: This study is part of a larger project with a participatory appreciative action and reflection (PAAR) approach. We invited older persons, relatives, nurse assistants, registered nurses, and their managers to co-create knowledge with us on how conditions for a sense of security can be created during evenings and nights among older persons receiving home health care in ordinary housing. We performed thematic analysis of the data. RESULTS: Five subthemes were developed that gave structure to two main themes. The first main theme, To confirm the self-image, has the following subthemes: To see the home as a reflection of the person's identity and To maintain self-determination. The second main theme, To create interaction in a sheltered place, has these subthemes: To undress the power, To create control and lifelines, and To create a good sleeping environment. The two themes interact and are each other's conditions. The person's self-image must be confirmed in order to create interaction in a sheltered place and through the interaction, the self-image is confirmed. CONCLUSION: Conditions necessary for older persons to have a sense of security are living in a familiar environment, having habits and routines maintained, and having self-determination. Other conditions are equality, the prevention of falls, and an individualized sleeping environment. Older people's self-determination should be honored, and they should not being excluded from decision-making. We need to ask them if the conditions are sufficient and their sense of security is great enough to allow them to continue living in their ordinary housing.

Patient participation in municipal elderly care from the perspective of nurses and occupational therapists.

AIM: The aim of this study was to describe how nurses and occupational therapists in municipal care of older people define and implement patient participation in their daily work. DESIGN: This study had a cross-sectional design. Data were collected using an online questionnaire. METHODS: The questionnaire had both closed and open-ended questions. One-hundred and fourteen nurses and occupational therapists responded. Data were analysed with descriptive statistics and thematic analysis. RESULTS: Two main themes were identified as follows: "The professionals' perspective at the centre - Patient participation to enhance compliance" and "The patients' perspective at the centre - Patient participation as an ongoing process." The themes covered a continuum. On one extreme, patient participation was equated with making the patient comply with what the professionals wanted to do. On the other extreme, all power was transferred to the patient. The first theme was restricted to the decision-making process. The second theme covered the entire care or, rehabilitation, process.

It's not all about moral reasoning: Understanding the content of Moral Case Deliberation.

BACKGROUND: Moral Case Deliberation is one form of clinical ethics support described as a facilitator-led collective moral reasoning by healthcare professionals on a concrete moral question connected to their practice. Evaluation research is needed, but, as human interaction is difficult to standardise, there is a need to capture the content beyond moral reasoning. This allows for a better understanding of Moral Case Deliberation, which may contribute to further development of valid outcome criteria and stimulate the normative discussion of what Moral Case Deliberation should contain. OBJECTIVE: To explore and compare the content beyond moral reasoning in the dialogue in Moral Case Deliberation at Swedish workplaces. METHODS: A mixed-methods approach was applied for analysing audio-recordings of 70 periodic Moral Case Deliberation meetings at 10 Swedish workplaces. Moral Case Deliberation facilitators and various healthcare professions participated, with registered nurses comprising the majority. Ethical considerations: No objection to the study was made by an Ethical Review Board. After oral and written information was provided, consent to be recorded was assumed by virtue of participation. FINDINGS: Other than 'moral reasoning' (median (md): 45% of the spoken time), the Moral Case Deliberations consisted of 'reflections on the psychosocial work environment' to a varying extent (md: 29%). Additional content comprised 'assumptions about the patient's psychosocial situation' (md: 6%), 'facts about the patient's situation' (md: 5%), 'concrete problem-solving' (md: 6%) and 'process' (md: 3%). CONCLUSION: The findings suggest that a restorative function of staff's wellbeing in Moral Case Deliberation is needed, as this might contribute to good patient care. This supports outcome criteria of improved emotional support, which may include relief of moral distress. However, facilitators need a strategy for how to proceed from the participants' own emotional needs and to develop the use of their emotional knowing to focus on the ethically difficult patient situation.

Palliative Care Research--A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 2012.

BACKGROUND: In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci. METHODS: A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'. RESULTS: A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age. CONCLUSIONS: The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes.

What healthcare teams find ethically difficult.

BACKGROUND: Ethically difficult situations are frequently encountered by healthcare professionals. Moral case deliberation is one form of clinical ethics support, which has the goal to support staff to manage ethical difficulties. However, little is known which difficult situations healthcare teams need to discuss. AIM: To explore which kinds of ethically difficult situations interprofessional healthcare teams raise during moral case deliberation. RESEARCH DESIGN: A series of 70 moral case deliberation sessions were audio-recorded in 10 Swedish workplaces. A descriptive, qualitative approach was applied, using thematic content analysis. Ethical considerations: An advisory statement specifying no objections to the study was provided from an Ethical Review Board, and consent to be recorded was assumed by virtue of participation in the moral case deliberation. FINDINGS: Three themes emerged: powerlessness over managing difficult interactions with patients and next-of-kin, unease over unsafe and unequal care, and uncertainty over who should have power over care decisions. The powerlessness comprised feelings of insufficiency, difficulties to respond or manage patient's/next-of-kin's emotional needs or emotional outbursts and discouragement over motivating patients not taking responsibility for themselves. They could be uncertain over the patient's autonomy, who should have power over life and death, disclosing the truth or how much power next-of-kin should have. DISCUSSION: The findings suggest that the nature of the ethically difficult situations brought to moral case deliberations contained more relational-oriented ethics than principle-based ethics, were permeated by emotions and the uncertainties were pervaded by power aspects between stakeholders. CONCLUSION: MCD can be useful in understanding the connection between ethical issues and emotions from a team perspective.

Making Each Other's Daily Life: Nurse Assistants' Experiences and Knowledge on Developing a Meaningful Daily Life in Nursing Homes.

BACKGROUND: In a larger action research project, guidelines were generated for how a meaningful daily life could be developed for older persons. In this study, we focused on the nurse assistants' (NAs) perspectives, as their knowledge is essential for a well-functioning team and quality of care. The aim was to learn from NAs' experiences and knowledge about how to develop a meaningful daily life for older persons in nursing homes and the meaning NAs ascribe to their work. METHODS: The project is based on Participatory and Appreciative Action and Reflection. Data were generated through interviews, participating observations and informal conversations with 27 NAs working in nursing homes in Sweden, and a thematic analysis was used. RESULT: NAs developed a meaningful daily life by sensing and finding the "right" way of being (Theme 1). They sense and read the older person in order to judge how the person was feeling (Theme 2). They adapt to the older person (Theme 3) and share their daily life (Theme 4). NAs use emotional involvement to develop a meaningful daily life for the older person and meaning in their own work (Theme 5), ultimately making each other's daily lives meaningful. CONCLUSION: IT WAS OBVIOUS THAT NAS BASED THE DEVELOPMENT OF A MEANINGFUL DAILY LIFE ON DIFFERENT FORMS OF KNOWLEDGE: the oreticaland practical knowledge, and practical wisdom, all of which are intertwined. These results could be used within the team to constitute a meaningful daily life for older persons in nursing homes.

A meaningful daily life in nursing homes - a place of shelter and a space of freedom: a participatory appreciative action reflection study.

BACKGROUND: Shortcomings in elderly care have been reported in many parts of the world, including Sweden. However, national guidelines for elderly care have been introduced in Sweden, which contain core values and local guarantees of dignity. These highlight the need for dignity and well-being, and organising the older person's daily life so that they perceive it as meaningful. Therefore, the aim of the present study was to describe older persons' experience and knowledge about obstacles, opportunities and solutions to developing a meaningful daily life for those living in nursing homes. METHODS: This study combined the Participatory Appreciative Action Reflection (PAAR) and hermeneutic approaches. Twenty-five older persons participated and persons with dementia or cognitive impairments were included. Repeated interviews were carried out as reflective conversations, leaving 50 interviews in total, wherein the older persons provided their analyses and reflections on a meaningful daily life. Finally, an analysis of the data was completed based on a life-world hermeneutic approach. RESULTS: We identified five tentative interpretations that describe obstacles, opportunities and solutions for a meaningful daily life. Themes 2 and 4 outline obstacles for a meaningful daily life, and Themes 1, 3 and 5 describe opportunities and solutions for a meaningful daily life: (1) Having space to be yourself; (2) No space to be yourself; (3) Belonging and security; (4) A feeling of insecurity; and (5) Longing for something to happen. In the main interpretation, we found that the five tentative interpretations are related to Tuan's concepts of space and place, where place can be described as security and stableness, and space as freedom and openness. CONCLUSIONS: The reciprocal relationship is a solution for a meaningful daily life and occurs in the interaction between staff and older persons in nursing homes. It is the balance of power, and constitutes a place of shelter and a space of freedom for a meaningful daily life. The older person must have balance between shelter and freedom to have a meaningful daily life.

Ontological Security in Nursing Homes for Older Persons - Person-Centred Care is the Power of Balance.

INTRODUCTION: The Swedish national guidelines for elderly care describe how older persons should be able to trust that their care is permeated with security. Different theoretical perspectives can be found that describe what creates security. Many studies have been done about security. However, few studies have explicitly asked older persons what security in nursing homes means to them. AIM: The aim of the study was to describe how older persons in nursing homes talked and reflected about security in their daily lives. METHOD: Nine older persons were interviewed in, in-depth interviews one to three times and the resulting data was analysed using content analysis. RESULTS: The older persons adapted to having their own needs and those of the other older persons met and to the staff routines which created a sense of security. At the same time, they longed for security in which they could trust themselves and create their own daily life. Further to have a sense of belonging and of being liked for created an internal, interpersonal and external security. This can be linked to an ontological security which means having a sense of confidence in the continuity of self-identity and order in events, a being in the world. CONCLUSION: Person-centred instead of institution- centred care can provide the balance of power that allows the older person to obtain ontological security in which the staff's ability to create a relationship with the older persons becomes crucial.

Meanings over time of working as a nurse in elderly care.

BACKGROUND: Although registered nurses (RNs) play a central role in the care of older persons, their work in elderly care has historically been described as "low status" in nursing. This is especially problematic due to the global issue of RN turnover, but there is still little evidence of how to change this trend. Better understanding is needed of the reasons why RNs work in elderly care, as well as knowledge of whether these reasons have changed over time. AIM: The aim was to explore the meaning of working in elderly care, over time, from the perspective of RNs. METHOD: We interviewed thirteen RNs working in nursing homes, six of them in 2000 and the remaining seven in 2012, and analysed the resulting data using Interpretive Description. RESULTS: The results show similarities and differences over time in the RNs' reasoning about the meaning of their work with older persons, from a focus on obstacles to a view of opportunities. CONCLUSION: An RN's intention to continue working in elderly care might be based on their beliefs; their view of older people, and their experiences of being able to influence the care. Managing this knowledge could be an essential factor in reversing the historical trend of RN work in elderly care being seen as low status, and the increasing turnover in such nurses. Our results could stimulate reflection on daily care and beliefs about caring for older persons.

Emotional knowing in nursing practice: In the encounter between life and death.

Patients, next of kin and nurses in surgical wards often raise existential questions in the encounter between life and death. Nurses' emotional knowing at this encounter is crucial. Consequently, this study's purpose was to analyse and describe nurses' emotional knowing to reveal (a) how this knowing is expressed in daily work and (b) what emotions, thoughts and actions this knowing includes. This study used combined ethnographic and hermeneutic methodologies. Data were collected using participant observations, informal conversations and interviews. We found that nurses' emotional knowing could be interpreted in relation to various rooms of emotions, thoughts and actions. Nurses' judgements formed these rooms. They strived to do things correctly in the normative room; created a safe, secure milieu for patients and next of kin in the safety-security room; and questioned their actions in the critical room. They created affinity for co-operation that benefitted encounters with patients in their affinity room. And they demonstrated sensitivity and compassion to patients and next of kin; sensitivity and compassion were particularly evident in the closeness room. In our main interpretation, we found that nurses' judgements in various rooms (emotional knowing) constitute an expression of practical wisdom (phronesis) in nursing practice.

Knowledge constructions in nursing practice: understanding and integrating different forms of knowledge.

In this combined ethnographic and hermeneutic study we examined which forms of knowledge nurses make use of and how they construct knowledge. We collected data using participant observations, informal conversations, and interviews. Nurses' knowledge construction took the form of a hermeneutic spiral, a journey in which the nurses moved up and down and horizontally, and in which they created understanding. The nurses constructed knowledge from reading the patient's record, the brief oral handover report, greeting the patient, and reading the patient. By being sensitive, using humor, and emotional involvement, they deepened their understanding. By being suspicious and self-critical, they sought interaction with nurse colleagues, the patient, doctor, and relatives, and obtained additional knowledge. They strove throughout the journey to be one step ahead in their efforts to attain an understanding of the patient's situation. We can relate the knowledge nurses make use of to intertwined forms of episteme, techne, and phronesis.

The encounter between informal and professional care at the end of life.

The purpose of this study was to obtain and describe in-depth knowledge about family carers' experiences of the encounter, in a hospital, between informal and professional care at the end of life. A hermeneutic approach was chosen, and we conducted interviews with 27 family carers 6 to 8 months after their loved one's death. In the encounter, the family carers made their own assessment of their loved one's condition and situation. The professionals' attitudes could both promote and impede the interaction between the two forms of care. Family carers' care actions were characterized by struggling to get treatment, being left behind, being partners, keeping the illness at a distance, hovering beside their loved one, waiting for death, and being experts and protectors. The main interpretation of the findings is that family carers possess practical knowledge about what care is the best, or least harmful, for their loved one. This can be linked to what Aristotle called phronesis.

A family's beliefs about cancer, dying, and death in the end of life.

The purpose of this case study was to describe the beliefs over time of a Swedish family and individual family members about cancer and death and how these beliefs affected their daily lives. Data were collected over 10 months using interviews, conversations, and diary notations. The beliefs were aggregated into eight main beliefs and four themes: Cancer is a deadly threat/death is a liberator, death can be held at bay/death can be lived near, dying is done alone/dying should not be done alone, and life has an end/life is endless. These beliefs appear to oscillate between seemingly contrasting poles. Some beliefs were shared by all family members, whereas others were described by only one or more members of the family. The complexity of daily life in families experiencing life-shortening illness underscores the need of individualized nursing care with openness to difference and collaboration as guiding principles.