"Being in Between": Nurses' Experiences When Caring for Individuals With Dementia and Encountering Family Caregivers' Existential Life Situations.

The focus of the current study was to explore nursing home staff's understanding and how they approach family caregivers' existential life situations when caring for individuals with dementia. A qualitative interview study was conducted with 20 nursing staff in two nursing homes in northern Sweden. Face-to-face interviews were analyzed using interpretive content analysis. One overarching theme with three themes and nine subthemes comprised the findings. The themes describe how nursing staff were "in between" when they cared for individuals with dementia and encountered family caregivers' existential life situations. Nurses acted as advocates and safeguarded family caregivers via dialogues and interactions. Nurses were supporters and by "being in between" they eased family caregivers' feelings of powerlessness in relation to dying and death. "Being in between" may give nurses a deeper understanding of family caregivers' existential needs, thus increasing family caregivers' well-being. [Res Gerontol Nurs. 2019; 12(2):91-98.].

The Shift in Existential Life Situations of Adult Children to Parents with Dementia Relocated to Nursing Homes.

BACKGROUND: Previous research describes spouses and adult children of people with dementia as a homogeneous group using one term: family caregivers. Recent research shows that the needs and experiences of spouses and adult children differ, therefore they cannot be studied as a homogeneous group. AIMS: The aim of the study was to describe the shift in existential life situations of adult children of a parent with dementia relocated to nursing homes. DESIGN: This is a qualitative study with an interpretive approach. METHODS: Face-to-face interviews were held with 11 adult children aged 48-65 years. The interviews lasted 30-60 minutes and data were analysed using interpretive content analysis. FINDINGS: The adult children described how they experienced their life situation before and after their parents' relocation. Before relocation they described feelings of powerlessness, loneliness in their responsibilities, loss and guilt. After relocation they had feelings of freedom, ongoing responsibility, living with loss and having a new relationship with death. CONCLUSION: The most important finding in our study was that adult children developed a different relationship with death than before the parent became affected by dementia. It is essential that healthcare staff understand and address the adult children's existential life situations and the suffering they are experiencing. Healthcare staff need to be conscious about adult children's needs for support to address their existential life situations before and after their parents relocate to nursing homes.

Healthcare professionals' documentation in nursing homes when caring for patients with dementia in end of life - a retrospective records review.

AIMS AND OBJECTIVES: To investigate how end-of-life care was described by healthcare professionals in records of deceased persons affected by dementia who had lived in Swedish nursing homes. BACKGROUND: In the final stage of dementia disease, the persons are often cared for at nursing homes and they often die there. The research concurs that a palliative approach to end-of-life care is essential but there are still some limitations regarding research about what constitutes the end-of-life care provided to persons affected by dementia in Sweden. DESIGN: Descriptive qualitative method with a retrospective approach. METHOD: Nursing records (n = 50) and medical records (n = 50) were retrospectively reviewed in two nursing homes. The analysis was conducted using deductive and inductive content analysis. Three phases of The Liverpool Care Pathway; Initial assessment, Continuous assessment and Follow-up, were used deductively to first sort the text in the records, then the text in each phase was further analysed with inductive content analysis. Four categories and 11 subcategories described the content in the records. RESULTS: The end-of-life care was described in the healthcare records based on such categories as decision-making, participation and communication, assessment and prevention of symptom and following up after the residents had died. CONCLUSION: Paticularly, physical symptoms were documented and, to a lesser degree, psychological or existential/spiritual needs. RELEVANCE TO CLINICAL PRACTICE: Healthcare professionals must have a holistic view of the person affected by dementia during the end-of-life care and, according to this study, more focus must be placed on their psychosocial and existential needs in the documentation of end-of-life care.

The existential life situations of spouses of persons with dementia before and after relocating to a nursing home.

OBJECTIVES: The aim was to describe the existential life situations of spouses who care for persons with dementia, before and after relocation to nursing homes. METHOD: This was a qualitative study among 11 spouses of persons with dementia, recruited via purposeful sampling. Data were collected through interviews and analysed with interpretive content analysis. RESULTS: Before the relocation to nursing homes, the spouses' existential life situations were characterized by feelings of shame and guilt, being isolated in the home. Spouses were also exposed to psychological threats, physical violence, and had feelings of placing one's own needs last. After the relocation, spouses described feelings of guilt and freedom, living with grief and thoughts of death, feelings of loneliness in the spousal relationship, and striving for acceptance despite a lack of completion. CONCLUSION: The existential life situation of spouses of persons with dementia is about being in limit situations which changes when the ill person relocates to a nursing home. This is important knowledge for health care staff to bear in mind at nursing homes when encountering spouses.

Experiences of long term ongoing structured support in early stage of dementia - a case study.

BACKGROUND: The prevalence of dementia diseases is increasing worldwide with advancing age and growing populations. In Sweden alone, which currently has a population of approximately 9 million people, there are about 25 000 persons diagnosed each year with a dementia. Consequently, after such a diagnosis, there is a need for support. The recipients of that support include next of kin who seek a variety of information, including potential lifestyle changes and ways of dealing with personality changes in their loved one who has a dementia. AIMS AND OBJECTIVES: The aim was to explore four couples experiences in long-term ongoing structured support groups. DESIGN: A single-case study using semi-structured interviews supported by 'diary notes' maintained by each participating couple were used. METHOD: Semi-structured interviews were analysed using content analysis. RESULT: Three categories represent the findings across the four cases: Knowledge about the disease, Sense of comfort and support, and, Kinship through shared experiences. One category, Longing for kinship was created exclusively for one of the couples. Viewing the emerging categories from a healthy ageing perspective, both comfort and support and kinship through shared experiences can be considered as components of larger themes of support and social interaction. CONCLUSIONS: Findings suggest that structured support groups are a good way to encourage discussions, allow persons with dementia to express themselves and support healthy ageing among partners.

Nurse's perspectives on care provided for patients with gamma-hydroxybutyric acid and gamma-butyrolactone abuse.

AIMS AND OBJECTIVES: To describe registered nurses' views and experiences providing care for gamma-hydroxybutyric acid and gamma-butyrolactone abuse inpatients in a psychiatric unit. BACKGROUND: Gamma-hydroxybutyric acid and gamma-butyrolactone are illegal drugs with potentially fatal outcomes that are entering wider use in Scandinavia. Gamma-hydroxybutyric acid-dependent persons with withdrawal symptoms often require forceful withdrawal treatment provided in psychiatric units. DESIGN: A qualitative study with a purposive sample including interviews from registered nurses. METHODS: Data were collected from interviews with 15 registered nurses working in specialised dependency units in psychiatric wards. The data collected were analysed through a descriptive, qualitative analysis. RESULTS: The registered nurses' narratives revealed four main areas of convergence: feelings of anxiety and despair, preparation for unpredictable and precarious situations, striving for good relationship and striving to optimise and develop nursing care. The interviews revealed that registered nurses reflect on and discuss their feelings about their patients' situations with colleagues; prepare themselves for potential aggressiveness and unpredictable situations; improve their care through conscious attitude adjustment and relationship-forming behaviours; and strive to increase their personal knowledge, maintain a hopeful outlook and exhibit a positive approach. These themes were found in all nine categories and sixteen subcategories. DISCUSSION: The findings based on the registered nurses' narratives indicated that the registered nurses experienced their work situation when caring for these patients to be very complex and demanding. CONCLUSION: The study revealed that registered nurses worked extensively to craft their approach and attitude towards their patients. It is clear that registered nurses use themselves as tools or instruments for the creation of good relationships, thus providing the best care possible. RELEVANCE TO CLINICAL PRACTICE: Registered nurses should be given more education, clearer guidelines and better guidance to assist them in facing such challenging and often problematic situations. One-on-one shadowing provides the possibility to create and develop relationship.

What it means to be an adult child of a person with dementia.

The prevalence of dementia as a disease has increased worldwide with advancing age and growing population numbers, affecting whole families. However, most previous research does not separate the spouses or cohabitants from the adult children, but instead regards all next of kin involved in the everyday care of the person suffering from dementia as caregivers. This has made it difficult to find previous research regarding what it means to be an adult child of a person with dementia, and as such, the aim of this study is to explore that topic. The method used was narrative interviews analysed using phenomenological hermeneutics. Our comprehensive understanding showed that to be an adult child of a person with dementia means being burdened with the responsibility to act on behalf of the diseased parent despite a deep sense of grief and loss, which leads to frustration and despondence. The adult children's existence and reality are threatened not only by the loss of the parent but also by the possibility that one day they too may inherit the disease. This could be compared to a psychic crisis, which is defined as a situation that leads to radical changes in the afflicted person's relationship to life and reality, or, simply, "an upset in a steady state." The findings suggest that adult children of people with dementia are in need of support for a substantial period of time in order to adapt to the fact that they have lost a parent who is still alive. They also need information about the disease and the process of diagnosis and treatment to feel more a part of the process, as well as understand the behavior and needs of their parent.

Nurses' opinions of pain and the assessed need for pain medication for the elderly.

The undertreatment of pain in the elderly living in nursing homes is a significant problem. In Swedish nursing homes, the registered nurse on duty is often responsible for 20-40 patients during the day with no daily contact from attending physicians. The aim of this study was to investigate the opinions of registered nurses regarding pain and the assessed need for pain medication for elderly patients using patient scenarios. Two patient scenarios were used in this study; a questionnaire and background information was provided. The scenarios consisted of one smiling patient and one grimacing patient, both with the same numeric rating scale value of pain, blood pressure, pulse rate, and respiration rate. Three questions regarding pain assessment and management followed the scenarios. The questionnaire was sent to all 128 registered nurses working daytime in elderly care in both municipal nursing homes and municipal home care in the mid-Sweden region. A total of 56 nurses participated, providing an answering frequency of 45%. Results showed that registered nurses with more experience did not have the same opinion about pain as the smiling patient and gave inadequate medication, which was not in accordance with recommendations from the county hospital and the World Health Organization.

The integration of chronic illness self-management.

Self-management is crucial for people living with chronic diseases, but the actual process of integrating self-management has not been explored in depth. In this article, we investigate the integration of self-management into the lives of people with chronic illness. In this longitudinal study, we used an interpretive description approach. Twenty-one individuals were interviewed regularly during the first 3 years after they were diagnosed with a chronic condition. We found self-management integration to be an ongoing process that included four phases: seeking effective self-management strategies, considering costs and benefits, creating routines and plans of action, and negotiating self-management that fits one's life. The participants managed the phases according to their context, e.g., illness experience, life situation, personal beliefs, and social support. Health care providers should therefore facilitate self-management integration by providing support that is adjusted to the person's phase of self-management integration and life context.

Who's in charge? The role of responsibility attribution in self-management among people with chronic illness.

OBJECTIVE: To explore how responsibility attribution influences self-management regimens among people with chronic illness. METHODS: This qualitative content analysis included 26 interviews with people living with chronic illness. RESULTS: The participants attributed responsibility to internal, external or a combination of these factors, meaning that they either assumed responsibility for self-management or considered other people or factors responsible. Internal responsibility was associated with a multifaceted self-management regimen, whereas external responsibility was related to "conventional" self-management such as taking medication, managing symptoms and lifestyle changes. CONCLUSION: How responsibility is attributed is vital for the way in which individuals perform self-management. In this study, those who attributed responsibility to external factors mainly performed recommended behaviours to control their illness. In contrast, to take charge of their illness and be an active participant in the care, individuals must take responsibility for themselves, i.e. internal responsibility. PRACTICE IMPLICATIONS: Health-care providers should acknowledge and support individuals' wishes about various levels of responsibility as well as different kinds of patient-provider relationships.

Postoperative pain after cesarean birth affects breastfeeding and infant care.

OBJECTIVE: To study women's experience of postoperative pain and pain relief after cesarean birth and factors associated with pain assessment and the birth experience. DESIGN: Descriptive patient survey. Data were collected through a questionnaire. The outcome variables were assessments of pain using a Visual Analog Scale and women's birth experience measured on a seven-point Likert scale. SETTING: Central Swedish county hospital, maternity unit. PATIENTS/PARTICIPANTS: The sample consisted of 60 women undergoing cesarean birth. RESULTS: Women reported high levels of experienced pain during the first 24 hours. Seventy-eight percent of the women scored greater than or equal to 4 on the Visual Analog Scale, which can be seen as inadequately treated pain. There was no difference between elective and emergency cesarean births in the levels of pain. In spite of high levels of pain, women were pleased with the pain relief. The risk of a negative birth experience was 80% higher for women undergoing an emergency cesarean birth compared with elective cesarean birth. Postoperative pain negatively affected breastfeeding and infant care. CONCLUSIONS: There is a need for individual and adequate pain treatment for women undergoing cesarean birth, as high levels of pain interfere with early infant care and breastfeeding.

Nurses' attitudes towards people with dementia: the semantic differential technique.

One important aspect of the nurse-patient relationship is nurses' attitudes towards their patients. Nurses' attitudes towards people with dementia have been studied from a wide range of approaches, but few authors have focused on the structure of these attitudes. This study aimed to identify a structure in licensed practical nurses' attitudes towards people with dementia. Twenty-one group dwelling units for people with dementia at 11 nursing homes participated in the study. A total of 1577 assessments of 178 patients were sent out to 181 respondents and 1237 answers were returned. The semantic differential technique was used. The scale had 57 bipolar pairs of adjectives that estimate an unknown number of dimensions of nurses' attitudes towards an identified patient. The assessments were analysed using entropy-based measures of association combined with structural plots. The analysis revealed four dimensions, which related to licensed practical nurses' opinions of the patients: an ethical and aesthetic dimension; an ability to understand; an ability to experience; and an ability for social interaction. The results of the study indicated that, on the positive to negative attitude continuum, the nurses' attitudes fell at the positive to neutral end. This is an important finding owing to the personhood perspective, from which it is reasonable to assume that, with a more positive attitude to people with dementia, the prerequisites for person-centred care will improve.

Nurses' attitudes towards older residents with long-term schizophrenia.

BACKGROUND: In institutional care, a symptom-oriented approach is a frequently used but seldom-discussed method for treating people with severe mental illness. AIM: To investigate whether nurses' approach could be explained with reference to a client's individual clinical picture or the fact that they had a diagnosis of schizophrenia. METHODS: An exploratory study of the staff's view of a caring approach for a fictitious older long-term schizophrenic resident was conducted. All nurses working in the field of psychiatry at seven different units in one municipality in northern Sweden were an integral part of the study. The units were divided into two groups and classified as 'dwelling' or 'support'. The 'dwelling group' was characterized by nurses working at traditional group dwellings, and the 'support group' by nurses working in small teams and visiting people with long-term mental illness in their homes. Responses were received from 62 women and 23 men, of whom 14 were Registered Nurses and 69 were Enrolled Nurses. A questionnaire was used, developed from a case description of a 68-year-old woman with typical symptoms of severe cognitive decline, with problematic behaviour and a diagnosis of long-term schizophrenia. FINDINGS: The main finding was that nurses with long experience became less sensitive in their relationship with the resident than less experienced nurses. There appeared to be a tendency for long work experience to have a negative effect on nurses' attitudes towards the resident. CONCLUSIONS: The nurses could be interpreted as being caught in a moral dilemma between ends and means. This dilemma could be represented on the one hand as the 'conformist mode', with an acceptance of ends and means, and on the other hand as the 'innovation mode', with acceptance of ends but with few legitimate means to achieve them.

The relationship between organizational climate and the content of daily life for people with dementia living in a group-dwelling.

1. One factor influencing the outcome of care may be nursing staff's experience of the organizational work climate. The aim of the study was to investigate how people with dementia spend their time in group-dwelling units (GD) with either a creative or less creative organizational climate. 2. For the study, two GD units assessed as having a creative organizational climate and two units assessed as having a less creative climate were selected. Eighteen residents living in the units assessed as creative and 20 residents living in the units assessed as less creative participated in the study. 3. For measuring the organizational climate the Creative Climate Questionnaire was used. Observations of residents' activities were classified according to the Patient Activity Classification. For measuring residents' functional ability the Multi-Dimensional Dementia Assessment Scale was used. Their cognitive capacity was measured with the Mini Mental State Examination. 4. Residents living in the units assessed as having a creative organizational climate spent 45.2% of the time with nursing staff, while those in the less creative climate spent 25.6% (P < 0.001). Time spent with fellow residents in the creative climate was 13.9% and in the less creative climate 31.3% (P < 0.001). There was no significant difference between the units according time spent with relatives and time spent alone. 5. Since the purpose of GD is to offer care adapted to the abilities and psychosocial needs of people suffering from dementia, a less creative climate can be a threat to the aims of GD. In order to maintain these, it is important for managers to be aware of the work climate and its impact on care for people with dementia.