Vibeke Lohne

The lonely battle for dignity: Individuals struggling with multiple sclerosis

Much is known about the phenomenon of dignity, yet there is still a need for implementing this understanding in clinical practice. The main purpose of this study was to find out how persons suffering from multiple sclerosis experience and understand dignity and violation in the context of a rehabilitation ward. A phenomenological-hermeneutic approach was used to extract the meaningful content of narratives from 14 patients with multiple sclerosis. Data were collected by personal research interviews. The findings revealed three main themes: (1) ‘invisibly captured in fatigue’; (2) ‘fighters’ law: one who does not ask will not receive’; and (3) ‘dignity is humanity’. The essence of the findings in this study is that dignity is humanity. According to the participants, dignity requires time and is experienced only in a context of empathy and mutual confidence.

The relationship between hope and caregiver strain in family caregivers of patients with advanced cancer.

Background: Today, family caregivers (FCs) are involved in all aspects of patient care. Hope influences one’s ability to cope with stressful situations. However, little information is available on how FCs’ levels of hope influence the strain they experience in their caregiving role. Objectives: The purposes of this study were to describe the levels of hope and caregiver strain in FCs of patients with advanced cancer and examine the relationship between hope and caregiver strain in these FCs. In addition, differences in hope and caregiver strain associated with a number of demographic characteristics are described. Methods: Family caregivers completed a demographic questionnaire, Herth Hope Index (HHI), and Caregiver Strain Index (CSI). Results: Of the 112 FCs, the majority were female (60%) and spouses (94%), with a mean age of 63.1 (SD, 10.7) years. Mean HHI score was 36.8 (SD, 4.0). Approximately 20% of the FCs reported a high level of caregiver strain, and these FCs were younger. The prevalence of perceived strain across subscales of the CSI was highest for emotional adjustment (70%). No relationships were found between HHI total scores and any of the CSI subscale scores. However, FCs with lower HHI scores reported significantly higher levels of caregiver strain. Conclusions: Findings from this study suggest that younger individuals may represent a high-risk group of FCs for both lower levels of hope and higher levels of caregiver strain. Implications for Practice: Oncology nurses need to identify FCs at highest risk for increased strain and provide interventions to enhance hope and decrease perceived strain.

The meaning of dignity in nursing home care as seen by relatives

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.

Aspects of indignity in nursing home residences as experienced by family caregivers

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.

Fostering dignity in the care of nursing home residents through slow caring

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.

Conscientious and proud but challenged as a stranger: Immigrant nurses' perceptions and descriptions of the Norwegian Healthcare system

The number of nurses in Norway educated outside of the European Union is increasing. The purpose of this study is to explore how immigrant nurses, all educated as nurses in their home countries, experience working as a nurse in Norway. The study has a qualitative design with a social constructivist perspective and is based on written narratives from open-ended questions representing 144 nurses from 18 different counties. Two main themes based on patterns from the participants’ text were constructed: ‘conscientious and proud as nurses’ and ‘impressed but challenged as strangers’. The findings are discussed in relation to research in cultural understanding. Immigrant nurses contribute with important knowledge and cultural competence to nursing and the Norwegian healthcare system, but there are also challenges. More knowledge is needed in education, research and in individual institutions about the contributions and challenges immigrant nurses bring with them.

Nudging in nursing

Nudging is a concept in behavioural science, political theory and economics that proposes indirect suggestions to try to achieve non-forced compliance and to influence the decision making and behaviour of groups and individuals. Researchers in medical ethics are currently discussing whether nudging is ethically permissible in healthcare. In this article, we examine current knowledge about how different decisions (rational and pre-rational decisions, major and minor decisions) are made and how this decision-making process pertains to patients. We view this knowledge in light of the nursing project and the ongoing debate regarding the ethical legitimacy of nudging in healthcare. We argue that it is insufficient to discuss nudging in nursing and healthcare in light of free will and patient autonomy alone. Sometimes, nurses must take charge and exhibit leadership in the nurse–patient relationship. From the perspective of nursing as leadership, nudging becomes a useful tool for directing and guiding patients towards the shared goals of health, recovery and independence and away from suffering. The use of nudging in nursing to influence patients’ decisions and actions must be in alignment with the nursing project and in accordance with patients’ own values and goals.

Tension between freedom and dependence-A challenge for residents who live in nursing homes

AIMS AND OBJECTIVES To present results from interviews of older people living in nursing homes, on how they experience freedom. BACKGROUND We know that freedom is an existential human matter, and research shows that freedom remains important throughout life. Freedom is also important for older people, but further research is needed to determine how these people experience their freedom. The background for this article was a Scandinavian study that occurred in nursing homes; the purpose of the study was to gain knowledge about whether the residents felt that their dignity was maintained and respected. DESIGN The design was hermeneutic, with qualitative research interviews. METHOD Twenty-eight residents living in nursing homes in Denmark, Sweden and Norway were interviewed. Collecting tools used were an interview guide and also a tape recorder. Researchers in the three countries performed the interviews. The data were transcribed and analysed on three levels of hermeneutic interpretation. RESULTS To have their freedom was emphasised as very important according to their experience of having their dignity taken care of. The following main themes emerged: (a) Autonomy or paternalism; (b) Inner and outer freedom; and (c) Dependence as an extra burden. CONCLUSIONS Residents in a nursing home may experience the feeling of having lost their freedom. This conclusion has implications for healthcare professionals and researchers, as it is important for residents in nursing homes to feel that they still have their freedom. RELEVANCE TO CLINICAL PRACTICE In clinical practice, it is important and valuable for the staff to consider how they can help older people feel that they still have their freedom.

A qualitative study of immigrant women on long-term sick leave and their experience of dignity

Abstract Purpose: The purpose of this study was to explore if and how immigrant women suffering from chronic pain experience and maintain their dignity, during rehabilitation. Methods: The study was designed as a field study, with participant observation and in-depth interviews. Participant observations were carried out during a rehabilitation course for 14 immigrant women on an outpatient clinic at a rehabilitation hospital in southern Norway. In-depth interviews were performed after the rehabilitation period. Hermeneutic analysis was applied to interpret the data. Results: Findings show that the immigrant women experienced dignity by being seen, respected and believed by family-members, healthcare personnel and other patients at the outpatient clinic. Moreover, they maintained their dignity through a sense of their own value, integrity, religious faith and hope for the future. Conclusions: The immigrant women maintained and protected their dignity by finding strength, pride, and self-worth in their religion and through their family-members’ affection. Taking responsibility for themselves and others and experiencing fellowship and equality with other women, they enhanced their dignity during their rehabilitation process. The caring attitudes and behavior of some healthcare personnel promoted patient dignity. They also gained hope and dignity by experiencing goodness, cultural competence, and sensitivity from healthcare personnel. Implications for rehabilitation This study shows that the family role is more important for the immigrant women than the role as an employee, although financial independence and being able to help relatives financially also were central. Fellowship and equality with other patients, together with a rehabilitation program, which is facilitated for different language levels, were understood as important factors for an effective recovery. Enough time to get to know the patients and cultural competence seems to be central components for the health care personnel to give efficient help to immigrants in rehabilitation. Immigrants from low/middle-income countries appear to apply their religiousness as a resource in their lives to a greater extent than native Norwegians do, and should be taken into consideration when planning and implementing rehabilitation programs for immigrants.

No man is an island : the silent struggle of invisible caregivers

No man is an island, according to John Donne [1]. Illness and suffering are like rings in the water. When patients struggle, their family and network are deeply involved as well [2]. “The purpose of nursing is to assist an individual, family or community to prevent or cope with the experience of illness and suffering and, if necessary, to find meaning in these experiences” [3]. This study focuses on family caregivers‘daily experiences when caring for their close ones (children, sisters and spouses) with multiple sclerosis. Patients suffering from multiple sclerosis (MS) suffer from a severe chronic and aggressive neurological disease, which involves increasing paralysis and sight problems, in addition to other problems depending on which area of the brain that is affected [4]. MS is stealing the energy and causes severe fatigue [5]. In addition, the increasing “foreignness” of the patients bodies [5] caused despair, frustration, helplessness, and desperation among both the patient and the family members [6].