Dignity and care for people with dementia living in nursing homes

This article presents and discusses findings from a qualitative study on how the dignity of patients with dementia is preserved or harmed when they live in a nursing home. The results build on participant observation in two nursing home wards, combined with qualitative interviews with seven relatives of patients with dementia. The most important issue for relatives was that their family member with dementia was confirmed as a relational human being. However, relatives experienced lack of resources and task-centred care as threats to confirming, relational care and to patients' dignity. Findings from participant observations confirmed this. In this article, we argue that care which focuses on the residents' personhood, combined with a relational focus, is of great importance in maintaining the dignity of people with dementia living in nursing homes.Norges forskningsråd 19088

The importance of moral sensitivity when including persons with dementia in qualitative research

Abstract The aim of this article is to show the importance of moral sensitivity when including persons with dementia in research. The article presents and discusses ethical challenges encountered when a total of 15 persons with dementia from two nursing homes and seven proxies were included in a qualitative study. The examples show that the ethical challenges may be unpredictable. As researchers, you participate with the informants in their daily life and in the interviews, and it is not possible to plan all that may happen during the research. A procedural proposal to an ethical committee at the beginning of a research project based on traditional research ethical principles may serve as a guideline, but it cannot solve all the ethical problems one faces during the research process. Our main argument in this article is, therefore, that moral sensitivity is required in addition to the traditional research ethical principles throughout the whole process of observing and interviewing the respondent

Older patients’ perspectives on illness and healthcare during the early phase of the COVID-19 pandemic

Background Equal access to healthcare is a core principle in Norway’s public healthcare system. The COVID-19 pandemic challenged healthcare systems in the early phase – in particular, related to testing and hospital capacity. There is little knowledge on how older people experienced being infected with an unfamiliar and severe disease, and how they experienced the need for healthcare early in the pandemic Aim To explore the experiences of older people infected by COVID-19 and their need for testing and hospitalisation. Research design An explorative and descriptive approach, with qualitative interviews conducted in October 2020. Participants and research context Seventeen participants above 60 years of age hospitalised due to COVID-19 during spring 2020 were recruited 6 months after discharge. Ethical considerations Ethical approval was granted by the Regional Committee for Medical and Health Research Ethics in South-Eastern Norway (155425). Findings The main finding was that the informants experienced vulnerability and arbitrariness. This finding was supported by three sub-themes: experiences with a severe and unfamiliar disease, the strict criteria and the importance of someone advocating needs. Discussion Participants described varying access to healthcare. Those who did not meet the national criteria to be tested or hospitalised struggled against the system. Findings reveal arbitrary access to healthcare, in contrast to Norway’s ethical principle of fair and just access to health services. Moreover, to access and receive necessary healthcare, informants were dependent on their next-of-kin’s advocacy. Conclusion Even when dealing with an unfamiliar disease, health professionals’ assessments of symptoms must be performed with an ethical obligation to applicate competent appraisal and the exercise of discernment; this is in line with care ethics and ethical standards for nurses. These perspectives are a significant part of caring and the intension of doing good.publishedVersio

Back to WHAT?:The role of research ethics in pandemic times

Abstract The Covid-19 pandemic creates an unprecedented threatening situation worldwide with an urgent need for critical reflection and new knowledge production, but also a need for imminent action despite prevailing knowledge gaps and multilevel uncertainty. With regard to the role of research ethics in these pandemic times some argue in favor of exceptionalism, others, including the authors of this paper, emphasize the urgent need to remain committed to core ethical principles and fundamental human rights obligations all reflected in research regulations and guidelines carefully crafted over time. In this paper we disentangle some of the arguments put forward in the ongoing debate about Covid-19 human challenge studies (CHIs) and the concomitant role of health-related research ethics in pandemic times. We suggest it might be helpful to think through a lens differentiating between risk, strict uncertainty and ignorance. We provide some examples of lessons learned by harm done in the name of research in the past and discuss the relevance of this legacy in the current situation

‘Brain fog’, guilt, and gratitude: experiences of symptoms and life changes in older survivors 6 months after hospitalisation for COVID-19

Purpose Several of those who have been infected with COVID-19 suffer from the post-COVID-19 condition months after the acute infection. Little is known about how older survivors have experienced the consequences and how these have affected their lives. The aim of this study was to explore how older survivors experienced post-COVID-19 condition and life changes approximately 6 months after hospitalisation for COVID-19. Methods The study had an explorative and descriptive design. Semi-structured interviews were performed with 17 participants from two local hospitals, 11 men and 6 women, aged 60 years and older (age range 60–96), approximately 6 months after hospitalisation for COVID-19. A thematic descriptive analysis inspired by Braun and Clarke was used. Results Two main themes and seven subthemes were revealed. The main themes were: From few to various persistent symptoms and Existential thoughts and reflections. Most of the participants experienced various physical and/or cognitive symptoms, such as reduced physical fitness, heavy breathing, fatigue, and ‘brain fog’. On the other hand, they also experienced guilt and gratitude for having survived. The recognition of having achieved other life perspectives was also present. Conclusion Six months after undergone COVID-19 the participants still experienced various distressing symptoms, which were in line with larger studies. The novel findings of this study were connected to the existential area, where the patients’ thoughts and reflections of guilt, gratitude, and new life perspectives were revealed. These findings are important for health professionals to consider when treating patients after COVID-19.publishedVersio

“This path I must walk alone”. Challenges experienced by older patients while recovering from severe COVID-19 – a qualitative study

This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativeco mmons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.Background: In March 2020, the COVID-19 pandemic challenged both the Norwegian population and healthcare system. In this study we explored how older men and women experienced rehabilitation and recovery after hospitali sation due to severe COVID-19. Methods: Semi-structured interviews with 17 participants aged 60–96 years were performed 6 months after dis charge from hospital. A thematic descriptive analysis was conducted. Results: The results revealed that the participants experienced a challenging span between loneliness and com panionship in recovering from severe COVID-19. The four subthemes highlighted experiences of being discharged to home and left to themselves, the importance of exercise and companionship at rehabilitation stay, requirement of self-efort and time to recover, and the challenging span between loneliness and companionship when being with family. Conclusion: Among participants, the experiences of loneliness throughout the recovery period were striking. An individualised approach including psychological support should be emphasized in primary healthcare to promote recovery in older survivors after severe COVID-19 and their next-of-kin.publishedVersio

Dignity in relationships and existence in nursing homes’ cultures

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.publishedVersio

Family Caregivers' Experiences in Nursing Homes: Narratives on Human Dignity and Uneasiness

This qualitative study focused on dignity in nursing homes from the perspective of family caregivers. Dignity is a complex concept and central to nursing. Dignity in nursing homes is a challenge, according to research. Family caregivers are frequently involved in their family members’ daily experiences at the nursing home. Twenty-eight family caregivers were included in this Scandinavian cross-country, descriptive, and explorative study. A phenomenological-hermeneutic approach was used to understand the meaning of the narrated text. The interpretations revealed two main themes: “One should treat others as one would like others to treat oneself” and “Uneasiness due to indignity.” Dignity was maintained in experiences of respect, confidence, security, and charity. Uneasiness occurred when indignity arose. Although family caregivers may be taciturn, their voices are important in nursing homes. Further investigation of family caregivers’ experiences in the context of nursing homes is warranted

Maintaining dignity in vulnerability : A qualitative study of the residents' perspective on dignity in nursing homes

Author's accepted version (post-print)

Dignity and existential concerns among nursing homes residents from the perspective of their relatives

Aims and objectives: The aim of this cross-country Scandinavian study was to explore how residents in nursing homes experience that their dignity is promoted and attended to. This is one part of the Scandinavian project in which we interviewed residents, relatives and staff members. Background: The main subject concerns the dignity of residents of nursing homes for older people. This article brings forward results from interviews of relatives on how they experience that the dignity is met, promoted and attended to for their next of kin. Design: The study was qualitative with a hermeneutic approach. Methods: Qualitative research interviews of 28 relatives of residents at six participating nursing homes in Scandinavia. The results derive from analysis of the interviews using Kvale’s three levels of interpretation; self-understanding, common sense and a theoretical understanding. Results: The following themes emerged, from the perspective of the relatives, concerning what was deemed important to the resident according his existential needs and concerns: a). To have a comfortable, homely and practical room. b). To have close contact with family, friends and with the staff. c). To have aesthetic needs and concerns attended to. d). To have ethical needs and intrinsic values attended to. e). To have cultural and spiritual needs and concerns attended to. Conclusion: The results provide more substance to the theme and are all important in terms of the residents’ feeling of worthiness and dignity. In general it seemed that the relatives experienced a positive encounter with the staff, but it was also mentioned that staff members were not confronted about episodes that were undignified and disgraceful. This could be a sign or expression that they were worried that negative responses or complaints could lead to a kind of reprisal against the resident and to indignit