The Moral and Gender Implications of Measures Used to Modulate the Mobility of People With Dementia Living in Residential Care Environments: A Scoping Review.

BACKGROUND AND OBJECTIVES: Policies and measures often restrict the mobility of people with dementia living in residential care environments to protect them from harm. However, such measures can violate human rights and affect the quality of life. This review aims to summarize the literature on what is known about measures used to modulate the life-space mobility of residents with dementia living in a residential care environment. Furthermore, moral and sex and gender considerations were explored. RESEARCH DESIGN AND METHODS: A scoping review framework was referenced to summarize the literature. A total of 5 databases were searched: PubMed, Embase, CINAHL, SCOPUS, and Web of Science. The studies for eligibility using the Rayyan screening tool. RESULTS: A total of 30 articles met the inclusion criteria. A narrative description of the findings of the articles is presented across 3 themes: (1) measures and strategies used to modulate the life-space mobility; (2) moral aspects; and (3) sex and gender considerations. DISCUSSION AND IMPLICATIONS: Various measures are used to modulate the life-space mobility of people with dementia living in residential care facilities. Research exploring the sex and gender differences of people with dementia is lacking. With a focus on human rights and quality of life, measures used to restrict or support mobility must support the diverse needs, capacity, and dignity of people with dementia. Noting the capacity and diversity of people with dementia will require society and public space to adopt strategies that promote safety and mobility to support the quality of life of people with dementia.

"You Needed to Accept the Situation": Resilience of Nursing Home Residents in Times of COVID-19.

The restrictive measures taken by nursing homes during the COVID-19 outbreak in 2020 (e.g., quarantine) may have been important stressors for which residents needed resilience to safeguard their well-being. Based on 30 semi-structured interviews with nursing home residents and close relatives, this study explored the lived experiences with respect to the restrictive measures. The data were collected in psychogeriatric, somatic, and mixed wards in The Netherlands and Flanders, Belgium. The restrictive measures were important stressors for residents, indicated by feelings of loneliness, sadness, and powerlessness. To deal with these measures, residents used various resources, which were determined by factors in the individual (e.g., health), interactional (e.g., possibilities for social interactions) and contextual (e.g. nursing home policy) domains. Because the lived experiences with respect to the restrictive measures seemed to relate to the resilience of nursing home residents, it is crucial to reinforce resources in the individual, interactional, and contextual domains.

Family involvement in dementia special care units in nursing homes: A qualitative care ethical study into family experiences.

AIM: To explore the moral dimension of family experiences with being involved in the care of their loved one with dementia in the nursing home, using the care ethical framework of Tronto. DESIGN: This qualitative study used a care ethical approach in which empirical data and care ethical theory were dialectically related and mutually informing. METHODS: Fifteen close family members of nursing home residents with dementia were interviewed between February 2020 and October 2020. Forty-two interviews were conducted, based on a semi-structured open-ended design. A thematic narrative approach combined with the five phases of care as defined by Tronto was used to analyse the empirical data. Subsequently, Tronto's identified ethical qualities were used to identify the moral dimension of these empirical findings. RESULTS: We found that in the care process (1) family can find it difficult to recognize their loved one's care needs; (2) both family and staff are reluctant to discuss the allocation of responsibilities with each other; (3) family sometimes feels insecure when it comes to connecting with their loved one; (4) family is often reluctant to provide feedback to staff when they are critical about the care that has been given; and (5) family is generally mild in judging staff, due to staff shortages. The care ethical interpretation of these findings showed that the moral qualities of attentiveness, responsibility, competence, responsiveness, and solidarity are under pressure to a certain extent. CONCLUSION: Family experiences moral distress during the care process, which hinders family involvement in nursing homes for people with dementia. IMPACT: Nursing home staff can look for and pilot strategies focused on supporting families to act more in accordance with the moral qualities that are under pressure. This can improve family involvement in practice. PATIENT OR PUBLIC CONTRIBUTION: No Patient/Public Contribution. IMPLICATIONS FOR PRACTICE/POLICY: Nursing home staff paying more attention to families' emotional struggles related to the decline of their loved one, could help families to be more attentive to noticing true care needs of the resident. Both family and nursing home staff should take more often initiatives to evaluate the division of care responsibilities with each other. Nursing home staff should help family connect with their loved one during their visits if they experience difficulties in doing so. Nursing home staff taking more often initiatives to contact family and ask them how they perceive the care for their loved one, can positively affect the responsiveness of both family and staff. It would be helpful if nursing home management could ensure the presence of sufficient and qualified staff so that the first four phases of the care process are not hindered by the lack of staff.

Moral lessons from residents, close relatives and volunteers about the COVID-19 restrictions in Dutch and Flemish nursing homes.

BACKGROUND: During the COVID-19 outbreak in 2020, national governments took restrictive measures, such as a visitors ban, prohibition of group activities and quarantine, to protect nursing home residents against infections. As 'safety' prevailed, residents and close relatives had no choice but to accept the restrictions. Their perspectives are relevant because the policies had a major impact on them, but they were excluded from the policy decisions. In this study we looked into the moral attitudes of residents, close relatives and volunteers regarding the restrictions in retrospect, and what moral lessons they considered important. METHODS: We conducted 30 semi-structured interviews with residents and close relatives and one focus group meeting with volunteers working in nursing homes. Data were transcribed verbatim and analyzed inductively. Subsequently, three Socratic dialogue meetings with residents, close relatives and volunteers were organized in which first analysis outcomes were discussed and dialogues were fostered into moral lessons for future pandemics. Outcomes were combined with moral theory following an empirical bioethics design. RESULTS: Critical perspectives regarding the COVID-19 restrictions grew in time. Various moral values were compromised and steered moral lessons for our future. The participants recognized three moral lessons as most important. First, constructing tailored (well-balanced) solutions in practice is desirable. Second, proper recognition is needed for the caring role that close relatives fulfill in practice. Third, a responsive power distribution should be in place that includes all stakeholder perspectives who are affected by the restrictions. DISCUSSION: Comparing the results with moral theory strengthens the plea for inclusion of all stakeholder groups in decision-making processes. To further concretize the moral lessons, tailored solutions can be realized with the use of moral case deliberations. Proper recognition includes actions addressing moral repair and including counter-stories in the debate. Responsive power distribution starts with providing clear and trustworthy information and including all perspectives.

Acute Gastroenteritis: A Qualitative Study of Parental Motivations, Expectations, and Experiences During Out-of-Hours Primary Care.

PURPOSE: Acute gastroenteritis is a common infectious disease in children younger than 6 years of age. Although it is a self-limiting disease, it nevertheless has a high consultation rate in primary care, especially during out-of-hours primary care (OOH-PC). Reasons for this high consultation rate remain unclear. METHODS: The aim of this qualitative study was to explore parental motivations, expectations, and experiences of OOH-PC contacts for children with acute gastroenteritis. We conducted 14 semistructured interviews with parents who contacted OOH-PC in the Netherlands. Interviews were audio-recorded, transcribed, and analyzed using elements of grounded theory and a constant-comparison approach. RESULTS: Unusual behavior of the sick child, absent micturition, and ongoing vomiting and/or diarrhea, with decreased or no fluid intake, motivated parents to contact OOH-PC. Parents initiated contact to prevent symptom deterioration and to be reassured by a general practitioner (GP), expecting them to perform a thorough physical examination, provide information, and make follow-up plans. Parents reported dissatisfaction if they felt unheard, misunderstood, or not taken seriously, and this increased their likelihood of seeking another consultation. General practitioners did not always meet parental expectations. CONCLUSION: Multiple factors affect the decision for parents to contact OOH-PC for their child with gastroenteritis. There is a mismatch between parental expectations and actions of the GP. Awareness regarding parental feelings and understanding their expectations can guide GPs in the interaction with parents, which could improve satisfaction with primary health care and OOH-PC specifically.

The duty of confidentiality during family involvement: ethical challenges and possible solutions in the treatment of persons with psychotic disorders.

BACKGROUND: Family involvement during severe mental illness is still poorly implemented, contrary to evidence-based recommendations. Confidentiality issues are among the most prominent barriers, with mental health professionals facing complex ethical, legal, and practical challenges. However, research focusing on this barrier is very sparse. Nested within a cluster-randomised trial to implement guidelines on family involvement for persons with psychotic disorders in community mental health centres, the aim of this sub-study was to explore ethical challenges related to the duty of confidentiality as experienced by mental health professionals, and to explore key measures that might contribute to improving the handling of such challenges. METHODS: In total 75 participants participated in 21 semi-structured focus groups, including implementation team members at the initial and late phase of the intervention period and clinicians who were not on the implementation teams, at late phase of implementation. We used purposive sampling and manifest content analysis to explore participants' experiences and change processes. RESULTS: Ethical challenges related to the duty of confidentiality included 1) Uncertainty in how to apply the legislation, 2) Patient autonomy versus a less strict interpretation of the duty of confidentiality, 3) Patient alliance and beneficence versus a less strict interpretation of the duty of confidentiality, 4) How to deal with uncertainty regarding what relatives know about the patients' illness, and 5) Relatives' interests versus the duty of confidentiality. Measures to facilitate better handling of the duty of confidentiality included 1) Training and practice in family involvement, and 2) Standardisation of family involvement practices. CONCLUSION: When health professionals gained competence in and positive experiences with family involvement, this led to vital changes in how they interpreted and practiced the duty of confidentiality in their ethical reasoning and in clinical practice. Especially, the need to provide sufficient information to the patients about family involvement became evident during the study. To improve the handling of confidentiality issues, professionals should receive training in family involvement and confidentiality statutes followed by practice. Furthermore, family involvement should be standardised, and confidentiality guidelines should be implemented in the mental health services. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT03869177. Registered 11.03.19.

Family involvement in nursing homes: an interpretative synthesis of literature.

BACKGROUND: Family involvement in nursing homes is generally recognized as highly valuable for residents, staff and family members. However, family involvement continues to be challenging in practice. AIM: To contribute to the dialogue about family involvement and develop strategies to improve family involvement in the nursing home. METHODS: This interpretative synthesis consists of a thematic analysis and care ethical interpretation of issues regarding family involvement from the perspective of families in nursing homes reported in literature. FINDINGS: This study reveals the complexities of family involvement in the nursing home by drawing attention to the moral dimension of the issues experienced by families, as seen through the theoretical lens of Baier's care ethical concept of trust as a theoretical lens. The synthesis of literature resulted in a thematic categorization of issues reported by families, namely, family-staff relationship, psychosocial factors and organizational circumstances. The care ethical interpretation of the synthesis of literature showed that the concept of trust resonates with all reported issues. Trust evolves over time. Early issues are mostly related to getting to know each other. Secondly, families want to experience that staff are competent and of good will. Difficult feelings families may have, such as guilt or loneliness, and dealing with the deterioration of the loved one puts families in a vulnerable position. This power imbalance between family and staff impedes a trusting relationship. Issues related to organizational circumstances, such as understaffing, also undermine families' trust in staff and the nursing home. DISCUSSION AND CONCLUSION: Baier's theoretical concept of trust provides a deeper insight into the moral dimension of family involvement from the perspective of families in the nursing home. To improve family involvement in practice, we propose to aim future interventions at reinforcing trust in the relationship between family and staff as well as in the organizational context in which these care relationships occur.

"Precious Time Together Was Taken Away": Impact of COVID-19 Restrictive Measures on Social Needs and Loneliness from the Perspective of Residents of Nursing Homes, Close Relatives, and Volunteers.

During the COVID-19 outbreak in March 2020, restrictive measures (e.g., prohibiting physical visits and group activities) were introduced in nursing homes to protect older residents. Although the importance of social contacts and social activities to fulfill social needs and avoid loneliness is known, these were challenged during the pandemic. This qualitative study specifically focused on how residents, close relatives, and volunteers in nursing homes experienced the restrictive measures in retrospect and gained insights into the impact of the restrictive measures on social needs and loneliness, and the lessons that could be learned. Thirty semi-structured, face-to-face interviews with residents and close relatives, and one online focus group with ten volunteers, were conducted. Recruitment took place at psychogeriatric and somatic units in the Northern, Eastern and Southern regions of the Netherlands and Flanders, Belgium. The interviews and focus group were transcribed verbatim, and an open, inductive approach was used for analysis. Alternative ways of social contact could not fully compensate for physical visits. Generally, participants reported that it was a difficult time, indicated by feelings of loneliness, fear, sadness, and powerlessness. A great diversity in loneliness was reported. The most important reasons for feeling lonely were missing close social contacts and social activities. The diversity in the impact of restrictive measures depended on, e.g., social needs, coping strategies, and character. Restrictive COVID-19 measures in nursing homes resulted in negative emotions and unmet social needs of residents, close relatives, and volunteers. During future outbreaks of the COVID-19 virus or another virus or bacterium, for which restrictive measures may be needed, nursing homes should actively involve residents, close relatives, and volunteers to balance safety, self-determination, and well-being.

[Alcohol in nursing homes.] / Alcohol in verpleeghuizen.

A part of the residents of nursing homes drink alcohol. This regularly leads to moral questions and discussions. An explorative qualitative study has been done to gather insight into the experiences and views of residents and staff regarding alcohol consumption in nursing homes. Aim of this publication was to support care professionals in nursing homes to deal with moral challenges related to alcohol consumption. With interviews and a focus group with residents and staff, experiences, values and moral dilemmas were collected. While residents viewed alcohol consumption as a private matter, opinions of staff were not uniform. Staff is confronted with various moral questions based on different values, such as Respect for Autonomy, Quality of Life, Authenticity and (collective) Safety. This study advises staff to use the value scheme in case of concrete moral questions as a tool to careful analyse which values and norms are at stake and balance what could be an appropriate response.

Standards of practice in empirical bioethics research: towards a consensus.

BACKGROUND: This paper reports the process and outcome of a consensus finding project, which began with a meeting at the Brocher Foundation in May 2015. The project sought to generate and reach consensus on standards of practice for Empirical Bioethics research. The project involved 16 academics from 5 different European Countries, with a range of disciplinary backgrounds. METHODS: The consensus process used a modified Delphi approach. RESULTS: Consensus was reached on 15 standards of practice, organised into 6 domains of research practice (Aims, Questions, Integration, Conduct of Empirical Work, Conduct of Normative Work; Training & Expertise). CONCLUSIONS: Through articulating these standards we outline a position that encourages responses, and through those responses we will be able to identify points of agreement and contestation that will drive the conversation forward. In that vein, we would encourage researchers, funders and journals to engage with what we have proposed, and respond to us, so that our community of practice of empirical bioethics research can develop and evolve further.

Living with end-stage renal disease: Moral responsibilities of patients.

BACKGROUND:: Living with a renal disease often reduces quality of life because of the stress it entails. No attention has been paid to the moral challenges of living with renal disease. OBJECTIVES:: To explore the moral challenges of living with a renal disease. RESEARCH DESIGN:: A case study based on qualitative research. We used Walker's ethical framework combined with narrative ethics to analyse how negotiating care responsibilities lead to a new perspective on moral issues. PARTICIPANTS AND RESEARCH CONTEXT:: One case was chosen from 20 qualitative interviews with renal patients in the Netherlands. ETHICAL CONSIDERATIONS:: Several actions have been taken to ensure the informed consent, privacy, anonymity and confidentiality of the patient in this article. More details are offered in this article. The study has been conducted in line with the recommendations of the Medical Ethical Committee of the VU Medical Center. FINDINGS:: A renal disease can force people to change their identity, relationships, values and responsibilities. The case study illustrates the moral challenges confronting renal patients. DISCUSSION AND CONCLUSION::: Moral issues can be raised by the changes to identities, relationships, values and responsibilities caused by renal disease. Support services for renal patients and their relatives should pay more attention to these issues in order to promote self-management.

Worlds apart? A scoping review addressing different stakeholder perspectives on barriers to family involvement in the care for persons with severe mental illness.

BACKGROUND: Empirical evidence shows that family involvement (FI) can play a pivotal role in the coping and recovery of persons with severe mental illness (SMI). Nevertheless, various studies demonstrate that FI in mental healthcare services is often not (sufficiently) realized. In order to develop more insights, this scoping review gives an overview of how various stakeholders conceptualize, perceive and experience barriers to FI. Central questions are: 1) What are the main barriers to FI reported by the different key stakeholders (i.e. the persons with SMI, their families and the professionals, and 2) What are the differences and similarities between the various stakeholders' perspectives on these barriers. METHODS: A systematic search into primary studies regarding FI was conducted in four databases: Medline/Pubmed, Cinahl, PsychInfo and Web of Knowledge with the use of a PICO scheme. Thematic analysis focused on stakeholder perspectives (i.e. which stakeholder group reports the barrier) and types of barriers (i.e. which types of barriers are addressed). RESULTS: Thirty three studies were included. The main barriers reported by the stakeholder groups reveal important similarities and differences between the stakeholder groups and were related to: 1) the person with SMI, 2) the family, 3) the professionals, 4) the organization of care and 5) the culture-paradigm. DISCUSSION: Our stakeholder approach elicits the different stakeholders' concepts, presuppositions and experiences of barriers to FI, and gives fundamental insights on how to deal with barriers to FI. The stakeholders differing interpretations and perceptions of the barriers related to FI is closely related to the inherent complexity involved in FI in itself. In order to deal better with these barriers, openly discussing and reflecting upon each other's normative understandings of barriers is needed. CONCLUSIONS: Differences in perceptions of barriers to FI can itself be a barrier. To deal with barriers to FI, a dialogical approach on how the different stakeholders perceive and value FI and its barriers is required. Methods such as moral case deliberation or systematic ethics reflections can be useful.

Preventing seclusion in psychiatry: a care ethics perspective on the first five minutes at admission.

In this article, an intervention aimed at improving quality of care to prevent seclusion in psychiatry by focusing on the first five minutes at admission is analyzed from a care ethics perspective. Two cases are presented from an evaluation study in a psychiatric hospital. In both cases, the nurses follow the intervention protocol, but the outcome is different. In the first case, the patient ends up in the seclusion room. In the second case, this does not happen. Analyzing the cases from a care ethics perspective, we conclude that applying the intervention in the right way implies more than following the steps laid down in the protocol. It requires a new way of thinking and acting, resulting in new relationships between nurses and patients. Care ethics theory can help clarify what good care is actually about and keep in mind what is needed to apply the intervention. Thus, care ethics theory can be highly practical and helpful in changing and improving healthcare practice.

Theory and practice of clinical ethics support services: narrative and hermeneutical perspectives.

In this paper we introduce narrative and hermeneutical perspectives to clinical ethics support services (CESS). We propose a threefold consideration of 'theory' and show how it is interwoven with 'practice' as we go along. First, we look at theory in its foundational role: in our case 'narrative ethics' and 'philosophical hermeneutics' provide a theoretical base for clinical ethics by focusing on human identities entangled in stories and on moral understanding as a dialogical process. Second, we consider the role of theoretical notions in helping practitioners to understand their situation in clinical ethics practice, by using notions like 'story', 'responsibility', or 'vulnerability' to make explicit and explain their practical experience. Such theoretical notions help us to interpret clinical situations from an ethical perspective and to foster moral awareness of practitioners. And, thirdly, we examine how new theoretical concepts are developed by interpreting practice, using practice to form and improve our ethical theory. In this paper, we discuss this threefold use of theory in clinical ethics support services by reflecting on our own theoretical assumptions, methodological steps and practical experiences as ethicists, and by providing examples from our daily work. In doing so, we illustrate that theory and practice are interwoven, as theoretical understanding is dependent upon practical experience, and vice-versa.

Moral margins concerning the use of coercion in psychiatry.

In the closed wards of mental health institutions, moral decisions are made concerning the use of forced seclusion. In this article we focus on how these moral decisions are made and can be improved. We present a case study concerning moral deliberations on the use of seclusion and its prevention among nurses of a closed mental health ward. Moral psychology provides an explanation of how moral judgments are developed through processes of interaction. We will make use of the Social Intuitionist Model of Jonathan Haidt that emphasizes the role of emotions, intuitions and the social context in moral judgments and reasoning. We argue that this model can help to explain social dynamics in the context of enforced seclusion. In the discussion we explore how moral psychology can be complemented with the normative perspective of dialogical ethics to develop strategies for improving psychiatric practices. We conclude that social processes play an important role in moral deliberations and that moral development can be fostered by bringing in new perspectives in the dialogue. Moral case deliberation provides a practical tool to systematically organize moral reflections among nurses on the work floor.

The essence of psychiatric nursing: redefining nurses' identity through moral dialogue about reducing the use of coercion and restraint.

In this article, we focus on core values of psychiatric nurses in relation to coercion and constraint. We analyze changes that took place in a project aiming at reducing coercion at a closed inpatient ward of a psychiatric hospital. Using the philosophy of Hans-Georg Gadamer and Margaret Urban Walker, we analyze both the process of moral changes through dialogue and the outcome in terms of new identities and moral responsibilities. We conclude that the project stimulated nurses to redefine their roles and develop a deeper intersubjective understanding of core values of their profession.

Psychiatry in the age of neuroscience: the impact on clinical practice and lives of patients.

Due to the progress being made in the neurosciences, higher expectations for the use of medication, even against the patient's will, are arising in mental hospitals. In this article, we will discuss whether the neurosciences and new psychopharmacological solutions really support patients who suffer from mental illnesses. To answer this question, we will focus on the perspective of patients and their experiences with psychiatric (coercive) treatments. The analysis of one person's story shows that other issues besides appropriate medication are important for recovery from a mental illness. In daily life, issues such as coping, rehabilitation and social support are of major importance for a patient suffering from psychiatric disease. Thus, although progress in the neurosciences is a positive development for clinical practice, it does not mean that (coercive) medication alone will carry a patient into recovery. A patient's recovery is dependent, not only upon the process of finding the appropriate medication and trust between the psychiatrist and the patient, but also upon relational aspects, such as being recognised as a person, belonging, accepting responsibilities, developing friendships and trusting others. These findings lead to the conclusion that dealing with psychiatric diseases is more complex than what the biomedical model of neuroscience suggests and that one should include the social context of the patient in the recovery process.

Suite aux progrès des neurosciences, on observe une demande accrue de médication par les hôpitaux psychiatriques, parfois même à l'encontre de la volonté des patients. Dans cet article, nous nous interrogeons sur la pertinence des neurosciences et des nouvelles approches psychopharmacologiques dans le traitement des patients atteints de maladies mentales. À cette fin, nous examinons le point de vue du patient dans son expérience avec les traitements psychiatriques (coercitifs). L'analyse d'une histoire personnelle montre qu'il existe divers facteurs essentiels, autres que la médication, qui entrent en cause dans la guérison d'une maladie mentale. Au quotidien, des aspects tels que l'accompagnement, la réhabilitation et le support social se révèlent d'une importance majeure pour les patients atteints de troubles psychiatriques. Ainsi, même si les progrès en neurosciences s'avèrent positifs pour la pratique clinique, cela ne veut pas dire que la médication (coercitive), seule, mènera le patient à la guérison. En effet, cette guérison ne dépend pas uniquement de la découverte du médicament approprié et de la relation de confiance qui s'établit entre le psychiatre et son patient. Elle est aussi tributaire de la dimension relationnelle de la vie du patient, telle la reconnaissance individuelle, le sentiment d'appartenance, la prise de responsabilité, le développement d'amitiés et la confiance en autrui. Ces révélations nous mènent à la conclusion que la gestion des désordres psychiatriques est beaucoup plus complexe que le modèle des neurosciences le suggère et que le processus de traitement du patient inclus impérativement son contexte social.