To Örebro University

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.

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.

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.

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.

Background: Patient participation is well understood by health care professionals but not many studies have focused on the older adults and their perceptions of patient participation.

Aim and Objectives: To report an analysis of the concept of participation from the perspective of the older adult. Design: Concept analysis.

Methods: An integrative review approach was undertaken and the searches were limited from January 2003 to December 2014, guiding question was; “what constitutes patient participation according to the older adult?”

Results: Through the eyes of the older adults, a two-way communication should be initiated by the staff. Equality and sharing power between older adults and staffs was perceived as a precondition. Been given time was an essential issue, implying that older adults wished to have enough time from staffs and be in the right context surrounded by the appropriate environment in order to experience participation.

Conclusion: In order to experience participation for older adults, it is important that the health care professionals are aware of how and in what ways they can contribute to participation among older adults. The need or wish to create participation is not enough; the health care professional needs to see and understand participation through the older adult’s eyes. Thus, a person-centered nursing approach is relevant for the health care professional in order to both give and maintain the experience of participation to the older adult.

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.

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.

Background: Shortcomings in elderly care have been reported in many parts of the world, including Sweden. 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 organizing the older person’s daily life so that she/he perceives it as meaningful. Therefore, the aim of the present study was to explore opportunities, obstacles and search for solutions as described by the older person in order to create a meaningful daily life.

Methods: The design is based on the underpinning view of seeing the older persons as narrators of their own stories and interpreters of their own lives. Participatory Appreciative Action Reflection (PAAR) was used when collecting the data. Fifteen older persons participated, and repeated interviews were carried out as reflective conversations, in total 30 interviews. The older persons provided their analyses and reflections on what had been said regarding a meaningful daily life. Finally, an analysis of the data was done, based on interpretative description, and an inductive approach built on the key axioms of naturalistic inquiry.

Results: The older persons’ experiences and knowledge of opportunities, obstacles and solutions to a meaningful daily life can be summarized into four themes: (1) to live as usual, (2) collaboration with the staff, (3) the relationship carries everyday life, and (4) belonging to something. In the discussion, we choose to further develop these four themes by using Buber’s philosophy of dialogue.

Conclusions: An opportunity and a solution for meaningful daily life for the older person were seen in the relationship to oneself, to staff, to others, and the family. The reciprocal relationship, which occurred in the interaction between the staff and the older person, was the opportunity and solution for a meaningful daily life. It was the ongoing conversation between the older person and the staff who became "the glue" and formed the relationship. If the staff could support the older persons to maintain their habits and routines, these were solutions for creating a meaningful daily life. A meaningful daily life could be obtained in an I-Thou relation in a shared everyday life, where the relationship and the continuing dialogue becomes the power of balance. The relationship is also relevant for the staff and in line with Buber’s thoughts on how we are shaped by humans in the encounter with others.

This interdisciplinary action research project has its background in the Swedish government’s introduction of national guidelines to address deficiencies in elderly care, wherein it gave each municipality the responsibility to formulate its own guidelines. The main purpose is how we successfully involved stakeholders to create and agree on core values and local guarantees of dignity with regard to elderly care. This paper focuses on the choices we made that led to the politicians adopting the guidelines, and we discuss the lessons learned. This project is based on a participatory and appreciative action and reflection approach. We worked with stakeholders, including managers, politicians, older persons, relatives, nurse assistants, nurses, occupational therapists, and organizations for retired persons (n ∼ 386) in elderly care in three phases from 2010 to 2013. Firstly, we cocreated practical knowledge via interviews, focus group discussions, and participated in nurse assistants’ work. Secondly, we trained managers who formulated preliminary core values and guarantees of dignity. Thirdly, we returned to the stakeholders for a critical review. We learned it is possible to manage a project and involve stakeholders in an action research project by having access to scheduled meetings, providing training to managers, and using appreciative intelligence and technical aids.

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.