Systematic ethics support in community health services in Norway is in the initial phase. There are few evaluation studies about the significance of ethics reflection on care. The aim of this study was to evaluate systematic ethics reflection in groups in community health , - from the perspectives of employees participating in the groups, the group facilitators and the service managers. The reflection groups were implemented as part of a research and development project.

Research indicates the essentiality of dignity as a vital component for quality of life, reconfirming the emphasis on dignity preservation in the international code of nursing ethics. Applying Noblit and Hare’s meta-ethnography, the aim of the study was to develop a theory model by synthesizing 10 qualitative articles from various cultural contexts, exploring nurse and allied healthcare professional perception/practice concerning dignity-preserving dementia care. “Advocating the person’s autonomy and integrity,” which involves “having compassion for the person,” “confirming the person’s worthiness and (...) sense of self,” and “creating a humane and purposeful environment,” was identified as a primary foundation for dignity-preserving dementia care. “Balancing individual choices among persons no longer able to make sound decisions, against the duty of making choices on behalf of the person,” which involves “persuasion” and/or “mild restraint,” was considered a crucial aspect in certain situations. “Sheltering human worth—remembering those who forget” was identified as a comprehensive motive and core value within dignity-preserving dementia care. (shrink)

The overall purpose of this cross-country Nordic study was to gain further knowledge about maintaining and promoting dignity in nursing home residents. The purpose of this article is to present results pertaining to the following question: How is nursing home residents’ dignity maintained, promoted or deprived from the perspective of family caregivers? In this article, we focus only on indignity in care. This study took place at six different nursing home residences in Sweden, Denmark and Norway. Data collection methods in (...) this part of this study consisted of individual research interviews. Altogether, the sample consisted of 28 family caregivers of nursing home residents. The empirical material was interpreted using a hermeneutical approach. The overall theme that emerged was as follows: ‘A feeling of being abandoned’. The sub-themes are designated as follows: deprived of the feeling of belonging, deprived of dignity due to acts of omission, deprived of confirmation, deprived of dignity due to physical humiliation, deprived of dignity due to psychological humiliation and deprived of parts of life. (shrink)

Our study presents an overview of the issues that were brought forward by participants of a moral case deliberation (MCD) project in two elderly care organizations. The overview was inductively derived from all case descriptions (N = 202) provided by participants of seven mixed MCD groups, consisting of care providers from various professional backgrounds, from nursing assistant to physician. The MCD groups were part of a larger MCD project within two care institutions (residential homes and nursing homes). Care providers are (...) confronted with a wide variety of largely everyday ethical issues. We distinguished three main categories: ‘resident’s behavior’, ‘divergent perspectives on good care’ and ‘organizational context’. The overview can be used for agendasetting when institutions wish to stimulate reflection and deliberation. It is important that an agenda is constructed from the bottom-up and open to a variety of issues. In addition, organizing reflection and deliberation requires effort to identify moral questions in practice whilst at the same time maintaining the connection with the organizational context and existing communication structures. Once care providers are used to dealing with divergent perspectives, inviting different perspectives (e.g. family members) to take part in the deliberation, might help to identify and address ethical ‘blind spots’. (shrink)

The aim of this study was to illuminate the meaning of professional carers’ experiences in caring situations when a conflict of interest arises with the older person receiving care. The findings reveal the complexity of the carers’ ambivalence when facing a conflict of interest, weighing up between the older persons’ right to self-determination and external demands. The carers are alone in their ambivalence, and the conclusion is that they need help and support to be more present in the encounter. The (...) implication for this study is to focus on care as a person-centered practice and to focus on people as interdependent on support carers to maintain older people’s right to self-determination in the relationship. (shrink)

Ethics support is called for to improve the quality of care in elderly institutions. Various forms of ethics support are presented, but the needs for ethics support remain unknown. Using a mixed-methods design, this article systematically investigates the specific needs for ethics support in elderly care. The findings of two surveys, two focus groups and 17 interviews demonstrate that the availability of ethics support is limited. There is a need for ethics support, albeit not unconditionally. Advice-based forms of ethics support (...) are less appropriate as they are removed from practice. Ethics support should be tailored to the often mundane and easily overlooked moral issues that arise in long-term care. Attention should also be given to the learning styles of nurses who favour experiential learning. Raising awareness and developing a climate of openness and dialogue are the most suitable ways to deal with the mundane moral issues in elderly care. (shrink)

Our study presents an overview of the issues that were brought forward by participants of a moral case deliberation (MCD) project in two elderly care organizations. The overview was inductively derived from all case descriptions (N = 202) provided by participants of seven mixed MCD groups, consisting of care providers from various professional backgrounds, from nursing assistant to physician. The MCD groups were part of a larger MCD project within two care institutions (residential homes and nursing homes). Care providers are (...) confronted with a wide variety of largely everyday ethical issues. We distinguished three main categories: ‘resident’s behavior’, ‘divergent perspectives on good care’ and ‘organizational context’. The overview can be used for agendasetting when institutions wish to stimulate reflection and deliberation. It is important that an agenda is constructed from the bottom-up and open to a variety of issues. In addition, organizing reflection and deliberation requires effort to identify moral questions in practice whilst at the same time maintaining the connection with the organizational context and existing communication structures. Once care providers are used to dealing with divergent perspectives, inviting different perspectives (e.g. family members) to take part in the deliberation, might help to identify and address ethical ‘blind spots’. (shrink)

The aim of this study was to describe the experiences of older patients and their next of kin with regards to respect in the care given in an acute hospital. The data were collected using tape-recorded interviews (10 patients and 10 next of kin) and analysed via inductive content analysis. Based on the analysis, the concept of respect can be defined by the actions taken by nurses (polite behaviour, the patience to listen, reassurance, response to information needs, assistance in basic (...) needs, provision of pain relief, response to wishes and time management) and next of kin (support, assistance and advocacy) and by factors related to the environment (appreciation of older people in society, management of health-care organizations, the nursing culture, the flow of information and patient placement). The information will be used to develop an instrument for assessing how well respect is maintained in the care of older patients. (shrink)

Background In research on co-creation in nursing, a caring manner can be used to create opportunities for the patient to reach vital goals and thereby increase the patient’s quality of life in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. Nurses must be extra sensitive to patients’ and their relatives’ needs with regard to ethical and existential issues and situations in home care encounters, especially at the end of life. Aim The (...) aim of this study was to explore nurses’ experiences of dealing with ethical and existential issues through co-creation at the end of life in palliative home care. Research design, participants, and research context The material consisted of texts from interviews with 12 nurses in a home care context. A hermeneutical approach was used, and the method was inspired by a thematic analysis. Ethical considerations Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Ethical permission to conduct the study was given from organizations that participated in this study. Findings A main theme and four subthemes emerged. The main theme was “Deep co-creative relationships are needed to manage ethical and existential issues at the end of life.” A model was created to display the findings and relations between ethical issues and situations and the need for a deep trustful caring relationship to solve problems in palliative home care. Discussion Together, the themes can be considered as a tool for learning and dealing with ethical and existential issues at the end of life in home care. The themes can also be seen as a part of nurses’ ethical competence within this context. Conclusion The quality of life at the end of life can be improved through co-creation, despite difficult ethical and existential issues. Future research should focus on co-creation from the patients’ perspective. (shrink)

Background: Protecting the dignity of elderly residents of facilities and providing dignified care can be difficult. Although attempts have been made from several aspects, dignity is considered an area in which less real impact has been made in both theory and practice. Objective: The objective of this study is to characterize the concept of dignity in care for elderly subjects in residential facilities from a practical perspective through concept synthesis. Research design: This study includes in-depth interviews with residents of elderly (...) facilities and a literature review. Participants and research context: A total of 12 residents of seven facilities in three prefectures in Japan were recruited via purposive sampling, and 27 interviews were conducted. Each digitally recorded interview was transcribed verbatim. The interview data were analyzed based on hermeneutic phenomenological research. The literature was searched using PubMed, CINAHL, and Web of Science with combinations of terms such as dignity, elderly, and residential facilities and then selected according to the predefined inclusion criteria. The descriptions about dignity in the included studies were divided into codes and compared with the results of the interviews. Ethical considerations: This study was approved by the institutional review board of Nagoya University’s Graduate School of Medicine. Findings and discussion: There were 1728 data codes for the interviews from which four themes were generated. In the literature review, 3716 titles were searched, and 28 articles were selected. Combining these results, five following themes and a conceptual matrix were obtained: individual dignity not affected by others; dignified care in a narrow sense; elements of the staff side; dignity in relation to family members, friends, society, and other residents; and dignity in relation to nursing care facilities and the nursing care system. Conclusion: According to the established matrix, we must consider the role of the care system, facility, family, and society in providing care with dignity and the individual dignity to residents and dignity in daily care. (shrink)

Ethics support in primary health care has been sparser than in hospitals, the need for ethics support is probably no less. We have, however, limited knowledge about how to develop ethics support that responds to primary health-care workers’ needs. In this article, we present a survey with a mixture of closed- and open-ended questions concerning: How frequent and how distressed various types of ethical challenges make the primary health-care workers feel, how important they think it is to deal with these (...) challenges better and what kind of ethics support they want. Five primary health-care institutions participated. Ethical challenges seem to be prominent and common. Most frequently, the participants experienced ethical challenges related to scarce resources and lack of knowledge and skills. Furthermore, ethical challenges related to communication and decision making were common. The participants welcomed ethics support responding to their challenges and being integrated in their daily practices. (shrink)

The purpose of this study is to determine empirically the state of the art of the medical care, when healthcare personal is confronted with ethical dilemmas related with the care they give to the geriatric population. An observational, longitudinal, prospective and qualitative study was conducted by analyzing the correlation between healthcare personnel–patient relationship, and ethical judgments regarding dilemmas that arise in daily clinical practice with geriatric patients. Mexican healthcare personnel with current active practices were asked to write up an ethical (...) dilemma that arose frequently or that had impacted their medical practice. From the narrative input, we were able to draw up a database with 421 dilemmas, and those corresponding to patients 60 years and older were selected (n = 54, 12.8 %). The axiological analysis of the narrative dilemmas of geriatric patients was made using dialectical empiricism. The axiological analysis values found most frequently were classified into three groups: the impact of healthcare, the roles of the physician, and refusal of therapy; the healthcare role of educator, caring for the patients’ life and the risk of imminent death where the values found more often. The persistence and universality of certain dilemmas in geriatrics calls for awareness and requires a good training in the ethical discernment of these dilemmas. This would help to improve substantially the care and the life quality of this population. (shrink)

Background: Nursing home residents are a vulnerable population. Most of them suffer from multi-morbidity, while many have cognitive impairment or dementia and need care around the clock. Several ethical challenges in nursing homes have been described in the scientific literature. Most studies have used staff members as informants, some have focused on the relatives’ view, but substantial knowledge about the residents’ perspective is lacking. Objective: To study what nursing home residents and their relatives perceive as ethical challenges in Norwegian nursing (...) homes. Research design: A qualitative design with in-depth interviews with nursing home residents, and focus-group interviews with relatives of nursing home residents. The digitally recorded interviews were transcribed verbatim. Analysis was based on Interpretive Description. Participants and research context: A total of 25 nursing home residents from nine nursing homes in Norway, and 18 relatives of nursing home residents from three of these nursing homes. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Oslo, Norway. Findings and discussion: The main ethical challenges in Norwegian nursing homes from the residents’ and relatives’ perspective were as follows: (a) acceptance and adaptation, (b) well-being and a good life, (c) autonomy and self-determination, and (d) lack of resources. The relationship with the staff was of outmost importance and was experienced as both rewarding and problematic. None of the residents in our study mentioned ethical challenges connected to end-of-life care. Conclusion: Residents and relatives experience ethical challenges in Norwegian nursing homes, mostly connected to “everyday ethical issues.”. (shrink)

Background: As part of an ongoing Scandinavian project on the dignity of care for older people, this study is based on ‘clinical caring science’ as a scientific discipline. Clinical caring science examines how ground concepts, axioms and theories are expressed in different clinical contexts. Central notions are caring culture, dignity, at-home-ness, the little extra, non-caring cultures versus caring cultures and ethical context – and climate. Aim and assumptions: This study investigates the individual variations of caring cultures in relation to dignity (...) and how it is expressed in caring acts and ethical contexts. Three assumptions are formulated: (1) the caring culture of nursing homes influences whether dignified care is provided, (2) an ethos that is reflected on and appropriated by the caregiver mirrors itself in ethical caring acts and as artful caring in an ethical context and (3) caring culture is assumed to be a more ontological or universal concept than, for example, an ethical context or ethical person-to-person acts. Research design: The methodological approach is hermeneutic. The data consist of 28 interviews with relatives of older persons from Norway, Denmark and Sweden. Ethical considerations: The principles of voluntariness, confidentiality and anonymity were respected during the whole research process. Findings: Three patterns were revealed: dignity as at-home-ness, dignity as the little extra and non-dignifying ethical context. Discussion: Caring communion, invitation, at-home-ness and ‘the little extra’ are expressions of ethical contexts and caring acts in a caring culture. A non-caring culture may not consider the dignity of its residents and may be represented by routinized care that values organizational efficiency and instrumentalism rather than an individual’s dignity and self-worth. Conclusion: An ethos must be integrated in both the organization and in the individual caregiver in order to be expressed in caring acts and in an ethical context that supports these caring acts. (shrink)

While researchers have examined the types of ethical issues that arise in long-term care, few studies have explored long-term care nurses’ experiences of moral distress and fewer still have examined responses to initial moral distress. Using an interpretive description approach, 15 nurses working in long-term care settings within one city in Canada were interviewed about their responses to experiences of initial moral distress, resources or supports they identified as helpful or potentially helpful in dealing with these situations, and factors that (...) hindered nurses in their responses. Using a thematic analysis process, three major themes were identified from the nurses’ experiences: (i) the context of the situation matters; (ii) the value of coming together as a team; and (iii) looking for outside direction. The work of responding to initial moral distress was more fruitful if opportunities existed to discuss conflicts with other team members and if managers supported nurses in moving their concerns forward through meetings or conversations with the team, physician, or family. Access to objective others and opportunities for education about ethics were also identified as important for dealing with value conflicts. (shrink)

As patient autonomy expands, a highly controversial issue has emerged. Should the advance directives of refusing life-saving treatments or requesting euthanasia of persons with dementia who express changed minds or are often in a happy state be fulfilled? There are two autonomy-related positions. The mainstream position in philosophical discussions supports the priority of ADs based on precedent autonomy. Buchanan and Brock, and Dworkin represent this view. The other position supports the priority of PWDs’ current wishes based on minimal autonomy represented (...) by Jaworska. By rethinking the theoretical and practical challenges of the two positions and their arguments respectively, the paper concludes that in such a scenario, the priority of ADs is morally indefensible, and it is also challenging to establish minimal autonomy defend the moral priority of PWDs’ current wishes. For PWDs whose past values, beliefs, and preferences fade away but who retain apparent intrinsic sentience of well-being, a modified defined quality-of-life approach serves as another reasonable basis in their medical decision-making, and the ADs and the QoL should be further merged to reduce the uncertainty of the grey zone. (shrink)

Because of the transfer of responsibility from hospitals to community-based settings, providers in home-based care have more responsibilities and a wider range of tasks and responsibilities than before, often with limited resources. The increased responsibilities and the complexity of tasks and patient groups may lead to several ethical challenges. A systematic search in the databases MEDLINE, CINAHL, and SveMed+ was carried out in February 2019 and August 2020. The research question was translated into a modified PICO worksheet. A total of (...) 40 articles were included. The review is conducted according to the Vancouver Protocol. The main findings from the systematic literature review show that ethical challenges experienced by healthcare and social care providers in home-based care are related to autonomy and balancing ethical principles, decisions regarding intensity of care, challenges related to priority settings, truth-telling, and balancing the professional role. Findings regarding ethical challenges within home-based care are in line with findings from institutional healthcare and social care settings. However, some significant differences from the institutional context are also highlighted. (shrink)

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. (shrink)

Background: Physical impairment and dependency on others may be a threat to dignity. Research questions: The purpose of this study was to explore dignity as a core concept in caring, and how healthcare personnel focus on and foster dignity in nursing home residents. Research design: This study has a hermeneutic design. Participants and research context: In all, 40 healthcare personnel from six nursing homes in Scandinavia participated in focus group interviews in this study. Ethical considerations: This study has been evaluated (...) and approved by the Regional Ethical Committees and the Social Science Data Services in the respective Scandinavian countries. Findings: Two main themes emerged: dignity as distinction (I), and dignity as influence and participation (II). Discussion: A common understanding was that stress and business was a daily challenge. Conclusion: Therefore, and according to the health personnel, maintaining human dignity requires slow caring in nursing homes, as an essential approach. (shrink)

Background: Maintaining dignity is important for successful aging, but there is lack of validated research instruments in the nursing literature to investigate dignity as perceived by the old people. Objective: This is a methodological study aiming to investigate the psychometric properties of the Greek version of Jacelon Attributed Dignity Scale as translated in the Greek language. Research design: A methodological approach consisting of translation, adaptation, and cross-cultural validation. A sample of 188 Greek-speaking old Cypriot persons drawn from the Hospital outpatient (...) departments was asked to complete the Greek versions of Jacelon Attributed Dignity Scale and the Instrumental Activities of Daily Living. Data analyses included internal consistency reliability (Cronbach’s alpha coefficient), item analysis, and exploratory factor analysis using principal component method with orthogonal varimax rotation. Ethical considerations: The study protocol was approved by the National Bioethics committee according to the national legislation. Permission to use the research instrument was granted from the author. Information about the aim and the benefits of the study was included in the information letter. Findings: Cronbach’s alpha for Greek version of Jacelon Attributed Dignity Scale was 0.90. Four factors emerged explaining 65.28% of the total variance, and item to total correlation values ranged from 0.25 to 0.74 indicating high internal consistency and homogeneity. Mean item score in Instrumental Activities of Daily Living was 5.6 (standard deviation = 1.7) for men and 6.7 (standard deviation = 1.7) for women, and the correlations between demographics, Instrumental Activities of Daily Living, and the four factors of the Greek version of Jacelon Attributed Dignity Scale were low; also in multiple linear regression, the values of R2 are presented low. Discussion: Demographic characteristics and degree of functionality seem to be associated with some of the dimensions of dignity but with low correlations; therefore, they cannot predict attributed dignity. Conclusion: The Greek version of Jacelon Attributed Dignity Scale is a valid and reliable tool to measure attributed dignity in Greek-speaking older adults, but further testing of the psychometric properties and other potential factors that may affect the attributed dignity is needed. (shrink)

The purpose of this study was to explore situations experienced by 12 health-care providers working in two nursing homes. Individual interviews, using a narrative approach, were conducted. A phenomenological–hermeneutical method, developed for researching life experiences, was applied in the analysis. The findings showed that good care situations are experienced when the time culture is flexible, the carers act in a sovereign time rhythm, not mentioning clock time or time as a stress factor. The results are discussed in terms of anthropological (...) and sociological theory: time as event and action and flexible time cultures. Care settings for persons with dementia represent many challenges, such as a heavy workload and time strain. Time ethics is a construction, understanding time used in caring for persons suffering from dementia, which involves a mature, responsible and flexible nursing approach to these patients. (shrink)

Ethical challenges are traditionally described in a negative light, even though moral conflict can express the individual ability to perceive when something is not working and promote change. The true question, therefore, is not to how to silence moral conflict but how to educate it. Although the need for ethical support of health- and social-care professionals in elderly care is clearly perceived, there is no universal method for providing effective interventions. The authors hypothesize that adequate training sessions can help care (...) professionals enhance this skill, once clear goals and specific educational techniques are set. This research tests the hypothesis on twenty care professionals working in acute and residential care settings for the elderly, building on the ethics round method. Mixed methods drawn from literature and the experience of educators were adapted to meet different educational goals. Moral issues can hardly be removed from a context characterized by increasing demand and decreasing resources, but they can be recognized and addressed with common efforts, a critical attitude, and a growth mindset. Enhancing these skills in qualified workers can help them accept the reality of work, release pressure, and identify common team goals. Introducing these skills before graduation can help future workers avoid unreal expectations and reduce frustration and early job quit rates. (shrink)

Introduction: Dignity is one of the most important values sensitively perceived by patients in nursing care. Older patients have been identified as having a high risk of losing their dignity in institutional care. To promote optimum nursing care, a deeper insight into the problem of older patients’ dignity is needed. Aim: The aim was to identify, analyse and synthesise the qualitative evidence of dignity views and factors affecting it from the nurses’ and older patients’ perspective in the context of nursing (...) care and to compare synthesised finding from the both perspective. Methods: A literature review of qualitative evidence was chosen as a study design. The ENTREQ statement was implemented to enhance transparency. The CASP – Qualitative checklist and the thematic synthesis for synthesised findings were used. The electronic databases Academic Search Complete, CINAHL, Health Source: Nursing/Academic Edition, MEDLINE and PROQUEST were used to gather information for qualitative studies. Results: A total of 306 papers were retrieved. Fourteen qualitative studies met the inclusion criteria and were included in the review after methodological quality assessment using CASP. Four main themes of dignity from nurses’ perspective were synthesised: seeing the patient as a unique person, communication and privacy, involving the patient, and working culture and environment. From the patients’ perspective, six main themes were synthesised: autonomy and control, privacy, relationships, care and comfort, communication and identity. The comparison shows that the key difference is that older patients highlighted the theme relationships and nurses underlined the theme working culture and environment. Conclusion: The model structures of the older patients’ dignity from both the nurses’ and patients’ perspectives support the idea of a multidimensional structure of human dignity. The resulting model might be used in a nursing self-reflection, in the management of the institutions providing all-day care for the older people and in the education and practice. (shrink)

Background: Ethical issues are increasingly being reported by care-providers; however, little is known about the nature of these issues within the nursing home. Ethical issues are unavoidable in healthcare and can result in opportunities for improving work and care conditions; however, they are also associated with detrimental outcomes including staff burnout and moral distress. Objectives: The purpose of this review was to identify prior research which focuses on ethical issues in the nursing home and to explore staffs’ experiences of ethical (...) issues. Methods: Using a systematic approach based on Aveyard (2014), a literature review was conducted which focused on ethical and moral issues, nurses and nursing assistants, and the nursing home. Findings: The most salient themes identified in the review included clashing ethical principles, issues related to communication, lack of resources and quality of care provision. The review also identified solutions for overcoming the ethical issues that were identified and revealed the definitional challenges that permeate this area of work. Conclusions: The review highlighted a need for improved ethics education for care-providers. (shrink)

Background: Ethical reflections over care practices are important. In order to be able to perform such reflections, healthcare professionals must learn to think critically about their care practice. Aim: The aim of this study was to evaluate whether an introduction to and practice in ethical reflections in community healthcare have consequences for the healthcare personnel’s practice. Research design: A mixed-methods design was adopted with five focus group interviews and an electronic questionnaire based on results from the interviews. Participants and research (...) context: A total of 29 community healthcare personnel with experience in ethical reflections participated in the interviews. The electronic questionnaire was sent via email to 2382 employees in community healthcare services in 13 municipalities in southern part of Norway. Ethical considerations: The study was guided by the intentions of the Declaration of Helsinki and ethical standard principles and approved by the Norwegian Social Science Data Services. Results: An introduction to and practice in performing ethical reflections brought about an ethical awareness with understanding and respect for both colleagues and patients. The leader had a key role. Lack of time was a hindrance for ethical reflections. Three factors could predict meaningful ethical reflections: higher age of personnel, higher percentage of employment and longer experience with ethical reflections. Discussion: According to other studies, ethical reflections may enhance moral development of colleagues and their actions as advocates for the patients. A deepened ethical awareness, professional competency and sufficient time resources will guarantee proper caregiving. Conclusion: A supportive environment that prioritizes participation in reflection meetings is decisive. To practice ethical reflections will provide better care for patients. A challenge for the community healthcare system is to offer adequate positions that provide the personnel an opportunity to be involved as caregivers and to participate in ethical reflections. (shrink)

Sexual self-determination is considered a fundamental human right by most of us living in Western societies. While we must abide by laws regarding consent and coercion, in general we expect to be able to engage in sexual behaviour whenever, and with whomever, we choose. For older people with dementia living in residential aged care facilities (RACFs), however, the issue becomes more complex. Staff often struggle to balance residents' rights with their duty of care, and negative attitudes towards older people's sexuality (...) can lead to residents' sexual expression being overlooked, ignored, or even discouraged. In particular, questions as to whether residents with dementia are able to consent to sexual activity or physically intimate relationships pose a challenge to RACF staff, and current legislation does little to assist them. This paper will address these issues, and will argue that, while every effort should be made to ensure that no resident comes to harm, RACFs must respect the rights of residents with dementia to make decisions about their sexuality, intimacy and physical relationships. (shrink)

Background: Neglect and abuse of elders in care institutions is a recurring issue in the media. Elders in care institutions are vulnerable due to their physical, cognitive, and verbal limitations. Such vulnerabilities may make them more susceptible to mistreatment by caregivers on whom they are heavily dependent. Objectives: The goal was to understand caregivers’ concerns about ensuring correct and proper treatment, as well as their experiences with neglect and abuse of older patients. This article examines resources and challenges of professional (...) ethics within the care setting. Research design: A study was conducted to explore the quality of care provided to older patients in nursing homes, geriatrics institutions, and ambulant care in the northwest region of Switzerland. Participants and research context: A total of 23 semi-structured interviews were conducted with nursing staff of varying experience levels. Ethical considerations: Ethical approval was granted by the competent regional ethics commission, Ethikkomission Nordwest-und Zentralschweiz EKNZ [Ethics Commission Northwest and Central Switzerland] (2014-015). Findings: Three themes emerged from our data analysis: professional identity, professional context, and professional relationships. Our findings indicate mutual vulnerabilities within these three themes, characterizing the interactions between nursing staff and older patients. Study participants believe that incidences of error, neglect, and abuse are consequences of their own vulnerability since they are not able to meet the demands of an overstraining work situation. Discussion: Different aspects of this mutual vulnerability are described and critically discussed as challenges for professional ethics. Conclusion: Early education, continuous training as well as better management and response from the institution are necessary to maintain professionalism while handling mutual vulnerabilities. (shrink)

The aim of this study was to illuminate the meaning of professional carers’ experiences in caring situations when a conflict of interest arises with the older person receiving care. The findings reveal the complexity of the carers’ ambivalence when facing a conflict of interest, weighing up between the older persons’ right to self-determination and external demands. The carers are alone in their ambivalence, and the conclusion is that they need help and support to be more present in the encounter. The (...) implication for this study is to focus on care as a person-centered practice and to focus on people as interdependent on support carers to maintain older people’s right to self-determination in the relationship. (shrink)

Introduction: Expressions of dignity as a clinical phenomenon in nursing homes as expressed by caregivers were investigated. A coherence could be detected between the concepts and phenomena of existence and dignity in relationships and caring culture as a context. A caring culture is interpreted by caregivers as the meaning-making of what is accepted or not in the ward culture. Background: The rationale for the connection between existence and dignity in relationships and caring culture is that suffering is a part of (...) existence, as well as compassion in relieving suffering, and ontological interdependency. Aim: To describe different expressions of dignity in relationships and existence in context of caring cultures from the perspective of the caregivers. Research design: The methodology and method are hermeneutic. The method used was to merge the theoretical preunderstanding as one horizon of understanding with empirical data. Participants and research context: Focus group interviews with caregivers in nursing homes. Ethical considerations: The principles of the Helsinki Declaration have been followed to, for example, preserve self-determination, integrity, dignity, confidentiality and privacy of the research persons. Findings: Data interpretation resulted in four themes: Encountering existential needs that promote dignity in a caring culture; To amplify dignity in relationships by the creative art of caring in a caring culture; Violation of dignity by ignorance or neglect in a non-caring culture and The ethic of words and appropriated ground values in a caring culture. Discussion: Dignity-promoting acts of caring, or dignity-depriving acts of non-caring are adequate to see from the perspective of dignity in relationships and existence and the caring culture. Conclusions: Dignity in relationships seems to touch the innermost existential life, as the existential life is dependent on confirmation from others. (shrink)

Certified nursing assistants (CNAs) provide the majority of direct care to nursing home residents in the United States and, therefore, are keys to ensuring optimal health outcomes for this frail older adult population. These diverse direct care workers, however, are often not recognized for their important contributions to older adult care and are subjected to poor working conditions. It is probable that social‐based discrimination lies at the core of poor treatment toward CNAs. This review uses perspectives from critical social theory (...) to explore the phenomenon of social‐based discrimination toward CNAs that may originate from social order, power, and culture. Understanding manifestations of social‐based discrimination in nursing homes is critical to creating solutions for severe disparity problems among perceived lower‐class workers and subsequently improving resident care delivery. (shrink)

Aim: This study explores experiences of patients suffering from Korsakoff’s syndrome. It contributes to improved reflection on the value of patient knowledge. Background: An ethics of care perspective states the importance of moving to patients in their vulnerable state of being, and to figure out patients’ individual needs necessary to provide good care. The information given by patients suffering from Korsakoff’s syndrome might be mistaken, invented and even not true. The value of these patients’ experiences and knowledge had not been (...) researched to date. Method: Data from six in-depth interviews were analysed concurrently through the constant comparative method. Ethical considerations: The principles of voluntariness, confidentiality and anonymity were respected during the research process. Findings: Four important themes within patients’ knowledge emerged: health condition, involuntary admission into the nursing home, the daily routine and interpretation of the caring abilities of healthcare professionals. The findings show that our respondents were able to provide a window into their inner perspective. Conclusion: This study deepens our understanding of the value of patient knowledge in situations where patients see the world in a different manner as do healthcare professionals. The conversations revealed personal subjective knowledge which our respondents create and live by. Healthcare professionals are encouraged to discover and affirm the understandings of these patients, and not be prepossessed due to the diagnosis or general nursing home rules. Understanding patients’ unique knowledge through appreciation of the complexity and richness of different views on the situation can assist to give a more humane response to individual needs and pain. Health staff in healthcare institutions are encouraged to evaluate the – unintended – effect of rigidly applied nursing home rules, and the government is challenged to rethink its policy about care, and provide more resources permitting relational care that nurtures the dignity of patients suffering from Korsakoff’s syndrome. (shrink)

Background: Generally, a person with dementia may be unable to make decisions by themselves and professionals may decide what is best for them. Unfortunately, in most cases, professionals assist a person with dementia to make decisions without clear explanation or consent. Whether a person with dementia possesses dignity in routine care is an important issue. Research objectives: The purpose of this study was to explore the lived experience of the healthcare professionals in providing dignified dementia care in Taiwan. Research design: (...) A qualitative, hermeneutic-phenomenological approach was conducted. Participants: Participants were enrolled by purpose sampling. Researchers performed in-depth interviews to reveal the essential ingredient of dignity within dementia care in Taiwan. A total of 20 cases were enrolled to achieve data saturation. Ethical considerations: This study was approved by the institutional review board. Before conducting the interview, interviewees provided informed consent. Findings: There were three themes and six categories that were addressed and constructed; within the themes, 23 Guidelines for Taiwan Dignified Dementia Care and 12 Principles for Dignified Dementia Care in Taiwan were developed. Discussion: From the data relating to dignity in dementia care, we can develop a more independent and dignified care environment to improve the quality of life of person with dementia in Taiwan. Conclusion: The results indicated that dignity within dementia care was constructed by the lived experience of the healthcare professionals, as well as affected by the culture of the organizations and society at the same time. (shrink)

Moral case deliberation (MCD) is a specific form of clinical ethics, aiming to stimulate ethical reflection in daily practice in order to improve the quality of care. This article focuses on the implementation of MCD in nursing homes and the questions how and where to organize MCD. The purpose of this study was to evaluate one way of organizing MCD in two Dutch nursing homes. In both of these nursing homes the MCD groups had a heterogeneous composition and were organized (...) apart from existing institutional communication structures. As part of a naturalistic evaluation, systematic observations, interviews and focus groups were completed. The findings indicate that the heterogeneous composition and MCD meetings separate from existing structures have benefits. However, the participants also reported negative experiences. This gives rise to the question whether a mixed MCD group which meets separately is an effective way to embed MCD as an instrument for reflection on moral issues in daily practice. We conclude that there is no single answer to that question. In the end, the two implementation strategies (i.e. within existing communication structures and a mixed MCD group) can be complementary to each other. (shrink)

Background:Many nursing homes appear as multicultural workplaces where the majority of healthcare providers have an ethnic minority background. This environment creates challenges linked to communication, interaction and cultural differences. Furthermore, the healthcare providers have varied experiences and understanding of what quality care of patients with dementia involves.Purpose:The aim of this study is to illuminate multi-ethnic healthcare providers’ lived experiences of their own working relationship, and its importance to quality care for people with dementia.Research design:The study is part of a greater (...) participatory action research project: ‘Hospice values in the care for persons with dementia’. The data material consists of extensive notes from seminars, project meetings and dialogue-based teaching. The text material was subjected to phenomenological-hermeneutical interpretation.Participants and research context:Participants in the project were healthcare providers working in a nursing home unit. The participants came from 15 different countries, had different formal qualifications, varied backgrounds and ethnic origins.Ethical considerations:The study is approved by the Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services.Findings:The results show that good working relationships, characterized by understanding each other’s vulnerability and willingness to learn from each other through shared experiences, are prerequisites for quality care. The healthcare providers further described ethical challenges as uncertainty and different understandings.Discussion:The results are discussed in the light of Lögstrup’s relational philosophy of ethics and the concepts of vulnerability, ethic responsibility, trust and openness of speech.Conclusion:The prerequisite for quality care for persons with dementia in a multicultural working environment is to create arenas for open discussions between the healthcare providers. Leadership is of great importance. (shrink)

Background: As part of an ongoing Scandinavian project on the dignity of care for older people, this study is based on ‘clinical caring science’ as a scientific discipline. Clinical caring science examines how ground concepts, axioms and theories are expressed in different clinical contexts. Central notions are caring culture, dignity, at-home-ness, the little extra, non-caring cultures versus caring cultures and ethical context – and climate. Aim and assumptions: This study investigates the individual variations of caring cultures in relation to dignity (...) and how it is expressed in caring acts and ethical contexts. Three assumptions are formulated: (1) the caring culture of nursing homes influences whether dignified care is provided, (2) an ethos that is reflected on and appropriated by the caregiver mirrors itself in ethical caring acts and as artful caring in an ethical context and (3) caring culture is assumed to be a more ontological or universal concept than, for example, an ethical context or ethical person-to-person acts. Research design: The methodological approach is hermeneutic. The data consist of 28 interviews with relatives of older persons from Norway, Denmark and Sweden. Ethical considerations: The principles of voluntariness, confidentiality and anonymity were respected during the whole research process. Findings: Three patterns were revealed: dignity as at-home-ness, dignity as the little extra and non-dignifying ethical context. Discussion: Caring communion, invitation, at-home-ness and ‘the little extra’ are expressions of ethical contexts and caring acts in a caring culture. A non-caring culture may not consider the dignity of its residents and may be represented by routinized care that values organizational efficiency and instrumentalism rather than an individual’s dignity and self-worth. Conclusion: An ethos must be integrated in both the organization and in the individual caregiver in order to be expressed in caring acts and in an ethical context that supports these caring acts. (shrink)

Background: The concept of dignity is recognised as a fundamental right in many countries. It is embedded into law, human rights legislation and is often visible in organisations’ philosophy of care, particularly in aged care. Yet, many authors describe difficulties in defining dignity and how it can be preserved for people living in long term care. Objectives: In this article, Nordenfelt’s ‘four notions of dignity’ are considered, drawing on research literature addressing the different perspectives of those who receive, observe or (...) deliver care in the context of the long-term care environment. Methods: A review of the literature was undertaken using the terms ‘nursing homes’, ‘residential care’ or ‘long-term care’. The terms were combined and the term ‘human dignity’ was added. A total of 29 articles met the inclusion criteria from the United Kingdom (14), United States (2), Australia (1), Sweden (3), Hong Kong (2), Norway (3), Nordic (1), Taiwan (1), Netherlands (1). Ethical Considerations: Every effort has been made to ensure an unbiased search of the literature with the intention of an accurate interpretation of findings. Discussion: The four notions of dignity outlined by Nordenfelt provide a comprehensive description of the concept of dignity which can be linked to the experiences of people living in long-term care today and provide a useful means of contextualising the experiences of older people, their families and significant others and also of staff in long-term care facilities. Of particular interest are the similarities of perspectives of dignity between these groups. The preservation of dignity implies that dignity is a quality inherent in us all. This links directly to the exploration and conclusions drawn from the literature review. Conversely, promoting dignity implies that dignity is something that can be influenced by others and external factors. Hence, there are a number of implications for practice. Conclusion: We suggest that two of Nordenfelt’s notions, ‘dignity of identity’ and ‘dignity of Menschenwüde’, are a common thread for residents, family members and staff when conceptualising dignity within long-term care environments. (shrink)

Introduction: To meet and take care of people with dementia implicate professional and moral challenges for caregivers. Using force happens daily. However, staff also encounter challenges with the management in the units. Managing the caretaking function is also significant in how caretakers experience working in dementia care. Purpose: The purpose of this study is to explore the caregiver’s experiences with ethical challenges in dementia care settings and the significance of professional leadership in this context. Method: The design is qualitative, and (...) data appear through narrative interviews. A total of 23 caretakers participated in the study. The transcribed interviews were subjected to a phenomenological-hermeneutical interpretation. Ethical considerations: The respondents signed an informed consent for participation prior to the interviews. They were assured anonymity and confidentiality in the publication of the data. Ricoeur’s method for interpretation ensures anonymity as the researcher relates to the data as one collective text. The study is part of a larger research project in ethics, in its entirety approved in line with the Helsinki Convention. Results: The findings show that the caretakers experienced inadequacy. Some of them described a negative work atmosphere where they experienced that their leaders did not take them seriously. Because of this, informal negative sub-groups functioned as an exclusive debriefing arena. Some of the informants described the opposite experience where the leaders actively supported them. Discussion: The analyses of the findings are discussed in light of the concepts of trust and mistrust in leadership. Conclusion: There is a correlation between the leadership and the caregivers’ experience of being in difficult situations. (shrink)

The aim of this observational longitudinal cohort study was to describe relationships over time between degrees of stress of conscience, perceptions of conscience, burnout scores and assessments of person-centred climate and social support among healthcare personnel working in municipal care of older people. This study was performed among registered nurses and nurse assistants (n = 488). Data were collected on two occasions. Results show that perceiving one’s conscience as a burden, having feelings of emotional exhaustion and depersonalization and noticing disturbing (...) conflicts between co-workers were positively associated with stress of conscience. No significant changes were observed during the year under study, but degrees of stress of conscience and burnout scores were higher than in previous studies, suggesting that downsizing and increased workloads can negatively affect healthcare personnel. Following and expressing one’s conscience in one’s work, and perceiving social support from superiors are of importance in buffering the effects of stress of conscience. (shrink)

There are studies on the normative ethical frameworks used by long-term care staff and studies proposing how staff should reason, but few studies explore how staff actually reason. This study reports on the ethical reasoning process and experiences of moral distress of long-term care staff in the provision of social care. Seven interdisciplinary focus groups were conducted with twenty front-line staff. Staff typically did not have difficulty determining the ethical decision and/or action; however, they frequently experience moral distress. To manage (...) these experiences of moral distress in making ethical decisions, staff 1) comply with being told what to do out of fear of consequences, 2) defer decisions to family, 3) “have a meeting,” 4) socialization into and acceptance of workplace culture. Findings suggest that to better understand how and why staff make ethical decisions and improve quality and ethical care, we must explore the interaction between front-line practice and organizational and public policy. (shrink)