Anne Kari Tolo Heggestad

‘Like a prison without bars’ Dementia and experiences of dignity

The aim of this article is to investigate how life in Norwegian nursing homes may affect experiences of dignity among persons with dementia. The study had a qualitative design and used a phenomenological and hermeneutic approach. Participant observation in two nursing home units was combined with qualitative interviews with five residents living in these units. The study took place between March and December 2010. The residents feel that their freedom is restricted, and they describe feelings of homesickness. They also experience that they are not being seen and heard as individual autonomous persons. This lack of freedom, experiences of homesickness and feelings of not being confirmed and respected as individual autonomous persons may be a threat to their personal dignity. In order to protect and enforce the dignity of persons with dementia living in nursing home, we should confirm them as whole and as individual persons, and we should try to make the nursing homes less institutional and more home like.

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

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 respondents.

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.

How individuals with dementia in nursing homes maintain their dignity through life storytelling – a case study

AIMS AND OBJECTIVES The aim of this article was to present and discuss findings on what individuals with dementia do by themselves to maintain or promote their dignity of identity when they live in a nursing home. BACKGROUND The majority of residents living in Norwegian nursing homes suffer from dementia. Individuals who suffer from dementia are particularly vulnerable, and their dignity of identity is at risk. It is therefore of great importance to explore how we can maintain their dignity of identity. DESIGN The study builds on a phenomenological and hermeneutic design. METHODS The article reports three cases or life stories based on participant observation in two different nursing homes and interviews with five residents with dementia living in these nursing homes. Fifteen residents with dementia from these nursing home wards were included in the overall study. RESULTS Individuals with dementia living in nursing homes may use life storytelling or narratives to manage chaos and to find safety in their lives. Storytelling is also used as a way to present and maintain identity. We can see this as a way of maintaining dignity of identity or social dignity. CONCLUSION Life storytelling can be seen as an important way of preserving dignity for people with dementia. It is of great importance that health care professionals are open to and listen to the life stories people with dementia tell. RELEVANCE TO CLINICAL PRACTICE As nurses we have an obligation to ensure that dignity is enhanced in care for people with dementia. Knowledge about how residents with dementia use life storytelling as a way to maintain dignity is therefore of great importance to health care workers in nursing homes.

Undergraduate nursing students’ ability to empathize: A qualitative study

Background: Empathy is of great importance in nursing, as it helps us to see and meet the needs of patients and hence to care for patients in an appropriate way. Therefore, it is of great importance that nursing students and nurses develop their ability to empathize. Objective: The study aimed at gaining knowledge on what characterizes undergraduate nursing students’ ability to empathize with patients during their first practice in a nursing home. In addition, the aim of the study was to investigate what nursing students think is important with regard to upholding their ability to empathize with patients in a professional way. Research design: This research has a phenomenological and hermeneutic design, based on qualitative interviews. Participants and research context: A total of 11 undergraduate nursing students participated in interviews during or right after their first practice in a nursing home. Ethical considerations: Norwegian Social Science Data Services approved the study. Participants were informed that their participation was voluntary. The participants were also assured confidentiality, and they were informed that they could withdraw from the study at any time, without providing any reasons. Findings: What the findings show is that affective empathy is strong among undergraduate nursing students in their first practice. They think the emotions are important to be able to empathize, and they are afraid of becoming indifferent. At the same time, they are afraid that the feelings will hinder them from acting in a professional manner. Discussion: The findings are discussed in light of previous theories on empathy, and especially perspectives on empathy, emotions, and morality. Conclusion: Affective empathy seems to be strong among nursing students, and this may be of great importance to be sensitive to patients’ well-being. However, affective and cognitive empathy should be balanced if nurses will have to meet patients in a professional way.

Developing mature empathy among first-year students: The learning potential of emotional experiences:

Nursing students’ ability to develop mature empathy requires emotional work, usually associated with caring experiences in relation with patients and next of kin. This article is based on qualitative in-depth interviews with 11 first-year students, and the research questions were: What characterizes situations in a nursing home that evoke strong emotional reactions in first-year students? What is the learning potential of these experiences? Findings show that facing emotionally challenging situations during their first clinical placement in nursing education aroused strong feelings and commitment among the students. The students tried, however, to find ways to handle emotionally challenging situations both with support in scientific literature, as well as from experience. Nurses were important role models, but could also exemplify characteristics of less empathic behaviour. Developing ‘mature empathy’ requires emotional work so that the students learn to adapt themselves to what will be demanded of them as professional nurses. The findings of this and other studies should alert nurses as well as teachers to the importance of helping students develop empathy as part of their learning trajectory in nursing education.

The Dialectical Movement Between Deprivation and Preservation of a Person's Life Space: A Question of Nursing Home Residents' Dignity.

The aim of this study was to answer the question “What do nursing home residents do themselves in order to maintain their dignity?” Twenty-eight residents, 8 men and 20 women, aged 62 to 103 years, from 6 different nursing homes in Scandinavia were interviewed. The results showed that the residents tried to expand their life space, both physical and ontological, in order to experience health and dignity.