Male patients with inflammatory joint diseases are less likely than controls to be childless: results from a Norwegian population-based cohort study of 10 865 patients.

OBJECTIVES: To investigate the number of children per man and the proportion of childless men as a proxy of fertility in a national cohort of men with inflammatory joint diseases (IJDs), compared with matched controls from the general population. METHODS: This is a nationwide, population-based retrospective cohort study. Male patients with IJDs (n = 10 865) in the Norwegian Arthritis Registry were individually matched 1:5 on birth year and county of residence with men without IJDs obtained from the National Population Register (n = 54 325). Birth data were obtained from the Medical Birth Registry of Norway. We compared the mean number of children per man and the proportion of childless men and analysed the impact of age and year of diagnosis. RESULTS: The mean number of children per man in the patient group was 1.80 versus 1.69 in the comparison group (p <0.001), and 21% of the patients in the patient group were childless versus 27% in the comparison group (p <0.001). The finding of less childlessness and higher number of children per man remained consistent across age at diagnosis, except for those diagnosed at age 0-19 years. The difference in childlessness was most pronounced for men diagnosed after year 2000, especially when diagnosed at 30-39 years of age (22% vs 32%, p<0.001). CONCLUSION: In this large cohort study we found that patients with IJD have a higher number of children and are less likely to be childless compared with controls. Factors associated with developing or having an IJD might influence fertility and this requires further investigation.

Milieu therapy for hospitalized patients with late-life anxiety and depression: a qualitative study.

Background: Milieu therapy (MT) is an important interprofessional part of therapy for persons with late-life anxiety and depression in psychogeriatric inpatient units. Research on how this is conducted is scarce.Aim: To explore nurses' and nurse assistants' experience regarding MT interventions for persons with late-life anxiety and depression and how this is applied and conducted in the everyday life in a psychogeriatric inpatient unit.Method: Four focus group interviews with nurses and nurse assistants were conducted. Systematic text condensation was used for analyzing and interpreting the data.Results: MT was described as a dynamic and active process. Conscious individualized cooperation and communication day and night emerged as overarching theme, with following categories: 1. Collecting clues about the patient's history, challenges and coping strategies. 2. Active use of these clues. 3. Active use of the ward setting as arena for staff to learn from each other, for patients to learn from other patients and as frame for MT in general. Strategies from both psychiatric and dementia care were used in MT interventions.Conclusion: Results from this study describe content and complexity of MT strategies that can be supportive in everyday practice in psychogeriatric inpatient units and nursing homes, and have the potential to facilitate teaching, supervision and counseling of health professionals, caregivers and patients.

Purchasers' deliberations on psychosocial needs within the process of allocating healthcare services for older home-dwelling persons with dementia: a qualitative study.

BACKGROUND: Meeting psychosocial needs is a significant component of quality dementia care. To enable persons with dementia to live at home for as long as possible, a community healthcare service offering care where physical, social, psychological, cultural and spiritual needs are met, is recommended. A comprehensive allocation process is required to allocate individually tailored healthcare services. However, the allocation process for older home-dwelling persons with dementia, specifically for services to safeguard psychosocial needs, remains largely unexplored. Accordingly, this study aims to explore purchasers' deliberations on psychosocial needs during the process of allocating healthcare services to older home-dwelling persons with dementia. METHODS: The study had a descriptive design with a qualitative approach. The primary data source was focus group interviews with purchasers who assess and allocate healthcare services. The interview data were supplemented by a review of administrative decisions made by the purchasers. Data from the focus group interviews were analysed using a descriptive and interpretive approach. Content analysis of the administrative decisions was conducted. RESULTS: The purchasers described the allocation process as challenging. The following four themes reflect the complexity of the allocation process: (i) an unfamiliar and unclear concept; (ii) a hierarchy of needs; (iii) an adjusting allocation process; (iv) a challenging documentation of administrative decisions. CONCLUSIONS: The purchasers viewed a comprehensive allocation process as important. However, a web of different interplaying aspects prevented the purchasers from conducting a comprehensive need-led allocation process. Insufficient assessment or allocation threatens the adequate safeguarding of the psychosocial needs of persons with dementia. Having varied and sufficient services to allocate is of great importance, but is not sufficient. Psychosocial needs must be better incorporated as a significant element throughout the entire allocation process.

Meeting psychosocial needs for persons with dementia in home care services - a qualitative study of different perceptions and practices among health care providers.

BACKGROUND: The majority of persons with dementia are home-dwelling. To enable these persons to stay in their own homes as long as possible, a holistic, individual and flexible care is recommended. Despite a requirement for meeting psychological, social and physical needs, home care services seem to focus on patients' physical needs. Accordingly, the aim of this study was to explore how the psychosocial needs of home-dwelling, older persons with dementia were perceived, emphasized and met by home care services. METHODS: A descriptive, qualitative approach was used. Data were collected through semi-structured focus group interviews with 24 health care providers in home care services from four municipalities. Data were analysed using systematic text condensation. RESULTS: This study showed major differences in how health care providers perceived the psychosocial needs of older home-dwelling persons with dementia and how they perceived their responsibilities for meeting those psychosocial needs. The differences in the health care providers' perceptions seemed to significantly influence the provided care. Three co-existing logics of care were identified: the physical need-oriented logic, the renouncement logic and the integrated logic. CONCLUSIONS: The differences in how health care providers perceived the psychosocial needs of persons with dementia and their responsibilities for meeting those needs, influenced how the psychosocial needs were met. These differences indicates a need for a clarification of how psychosocial needs should be conceptualized and who should be responsible for meeting these needs. Further, increased competence and increased consciousness of psychosocial needs and how those needs can be met, are essential for delivering high-quality holistic care that enables persons with dementia to live in their own home for as long as possible.

Balancing the use of language to enable care: a qualitative study of oral and written language used in assessments and allocations of community healthcare services for persons with dementia.

BACKGROUND: Although a large number of people are diagnosed with dementia each year, the syndrome is still perceived as a sensitive and tabooed topic. Communication about dementia to those living with the syndrome and their relatives is often experienced as challenging by health professionals. Failure to communicate clearly may threaten assessment and allocation of appropriate, effective healthcare services. Accordingly, the aim of this study was to explore how purchasers, assessing and allocating healthcare services to home-dwelling older people with dementia, described challenges in communicating about dementia with those with the syndrome and their relatives. Furthermore, the study aimed to explore the purchasers' justifications for their choice of words. METHODS: A qualitative study was conducted to investigate two data sources: focus group interviews with purchasers assessing need for healthcare services, and a review of administrative decisions written by those allocating services. Focus group data were explored using an interpretive approach and qualitative content analysis was carried out with the administrative decisions. RESULTS: The purchasers found it challenging to talk and write about dementia to those with the syndrome and their relatives when assessing and allocating services. The purchasers were flexible in their communication and aimed to be open when talking and writing about dementia. However, euphemisms and omission were used extensively. Four justifications for the chosen verbal and written language were identified: avoiding disclosure; protecting the person with dementia; protecting the relatives/avoiding conflict; and last, taboo and stigma. CONCLUSIONS: Despite purchasers experiencing difficulties in communicating about dementia to those with the syndrome and their relatives, they did manage to communicate in a conscious and flexible way. The purchasers had several justifications for their language choice. However, extensive use of euphemisms and omission might threaten appropriate identification of needs and provision of high quality healthcare services. The challenges experienced by the purchasers demonstrate the need to focus on appropriate and flexible strategies for individually-tailored communication about dementia with people living with the syndrome.

A qualitative study of nurses' attitudes towards' and accommodations of patients' expressions of religiosity and faith in dementia care.

AIMS: To investigate nurses' attitudes towards and accommodations of patients' expressions of religiosity and faith in dementia care. BACKGROUND: Holistic care for people with dementia addresses patients' religiosity and faith. Nurses' accommodations of patients' religiosity have not been studied extensively even though nurses report a lack of experience and knowledge regarding religious care. DESIGN: This study has a qualitative research design. METHODS: Eight focus group interviews with 16 nurses and 15 care workers in four Norwegian nursing homes were conducted from June 2011-January 2012. The interview text was analysed using van Manen's hermeneutic-phenomenological approach and Lindseth and Nordberg's structural analysis. FINDINGS: The following three main themes reflected the nurses' and care workers' attitudes towards and accommodations of patients' expressions of religiosity and faith: (i) embarrassment vs. comfort, described in the sub-themes 'feelings of embarrassment' and 'religiosity as a private matter'; (ii) unknown religious practice vs. known religious practice, described as 'religious practice that was scary' or 'religious practice that was recognizable'; and (iii) death vs. life, described as 'difficulty talking about death 'or 'focusing on life and the quality of life'. CONCLUSION: Nurses and care workers were uncertain and lacked knowledge of the patients' expressions of religiosity and faith in terms of both their substance and their function. Nurses struggled with ambivalent feelings about patients' religious expressions and with unclear understanding of the significance of religiosity. These challenges compromised person-centred and holistic care on several occasions.

Enabling resources in people with dementia: a qualitative study about nurses' strategies that may support a sense of coherence in people with dementia.

AIMS AND OBJECTIVES: To explore nurses' strategies that may support the sense of coherence in people with dementia. BACKGROUND: People with dementia are often described as people with no resources, people who need support from family or from healthcare personnel to function in everyday life. Despite the disease, some people still have the resources needed to cope well with parts of their lives and experience coherence. To date, no research has explored any nurses' strategies that may support the sense of coherence in people with dementia. DESIGN: The design of the study is qualitative and exploratory. METHODS: Data were collected by participant observation and focus group interviews. Sixteen registered nurses from two different Norwegian nursing homes were recruited and participated in the study. Qualitative content analysis was used to analyse the data. RESULTS: The empirical material consisted of field notes from participant observation and transcripts from focus group interviews. Three generic categories were identified as strategies that may support sense of coherence in people with dementia: 'Finding and nurturing the individual's resources', 'Customising meaningful activities' and 'Finding creative solutions'. These categories were identified as strategies that may support and possibly enhance the sense of coherence in people with dementia. CONCLUSIONS: The findings provide an empirical base for assuming that with support and help from nurses, people with dementia may experience and strengthen their sense of coherence, therefore, the nurses need to be aware of the activities that may support and possibly enhance the sense of coherence in people with dementia. RELEVANCE TO CLINICAL PRACTICE: Despite the contextual limitations, this study highlights the need to identify and nurture resources in people with dementia, thus supporting their sense of coherence. The findings may contribute in enhancing the quality of care for people with dementia.

Spiritual care to persons with dementia in nursing homes; a qualitative study of nurses and care workers experiences.

BACKGROUND: Spiritual care for people with dementia who are in nursing homes is one aspect of the holistic care provided by nurses. A number of studies have explored the concepts of spirituality and religiosity, but fewer studies describe how nurses provide spiritual care in practice. The Purpose of the study was thus to investigate how nurses and care workers can provide spiritual care for people with dementia who live in nursing homes. METHODS: This is a qualitative study with an exploratory design using a phenomenological-hermeneutic approach. Interviews were conducted in eight focus groups with 31 nurses and care workers in 4 Norwegian nursing homes. RESULTS: The nurses were unsure about whether they actually provided spiritual care. Through discussions in the focus groups, a new understanding and insight was developed. The spiritual care that the nurses provided included: (1) integrating spiritual care into general care, described as 'physical touch' and 'responsiveness and intuition'; (2) spiritual care in terms of togetherness, described as 'being present' and 'sensitivity in communication'; and (3) spiritual care as providing meaningful activities for everyday life, described as 'facilitating activities' and 'meeting the residents' religious needs'. CONCLUSIONS: This study demonstrates the need for nurses and care workers to discuss and reflect on how to understand and describe spiritual care for people with dementia in practice. There is a need to develop and expand the knowledge about how to teach carers to recognize resident's spiritual needs and expressions of spirituality and to establish a comprehensive view of spiritual care for people with dementia in nursing homes.

When care situations evoke difficult emotions in nursing staff members: an ethnographic study in two Norwegian nursing homes.

BACKGROUND: Caring practice in nursing homes is a complex topic, especially the challenges of meeting the basic needs of residents when their behaviour evokes difficult emotions. Cognitive and physical changes related to aging and disability can contribute to behaviours considered to be unacceptable. For example, resident behaviours such as spitting, making a mess with food or grinding teeth are behaviours that most people do not want to see, hear or experience. The aim of this study was to gain a deeper understanding of how nursing home staff members deal with such behaviours in care situations. METHODS: This article draws on ethnographic data to describe how nursing home staff members manage unpleasant resident behaviours. The study was based on two long-term units in two Norwegian public nursing homes. The Region's Medical Ethics Committee and the Norwegian Social Science Data Services granted approval. In total, 45 participants (37 nursing aides and eight nurses) agreed to participate in this study. Ten of the participants were interviewed at the end of the field study. RESULTS: This study indicates that nursing home staff members experience difficult emotions related to some residents' behaviours. However, they found these feelings difficult to express and rarely verbalized them openly. In addition, they were characterized by a strong obligation to help all residents, despite their own feelings. Therefore, it appears that an inner struggle occurs as a part of everyday practice. CONCLUSIONS: Despite these difficult emotions, nursing staff members believed that they needed to manage their responses and continued to offer good care to all residents. These findings extend our understanding of this unarticulated part of nursing home practice.

Nurses' and care workers' experiences of spiritual needs in residents with dementia in nursing homes: a qualitative study.

BACKGROUND: The aim of the study was to investigate nurses' and care workers' experiences of spiritual needs among residents with dementia in nursing homes. Nurses claim to practice holistic nursing. Nevertheless, there is little knowledge about how to recognise spiritual needs in residents with dementia. METHODS: The study was conducted using a qualitative method with an exploratory design. Eight focus- group interviews in four Norwegian nursing homes were performed from June 2011 - Jan 2012. Using open-ended research questions, a total of 31 participants were asked to share their understanding and experiences regarding residents' spiritual needs. The interviews were analysed using a phenomenological - hermeneutical method. RESULTS: The nurses' and care workers' experiences of residents' spiritual needs were related to three main themes; i) The need for serenity and inner peace, described as "contemplative and restful moments" and "calmness due to familiarity", ii) The need for confirmation, described as "love and proximity" and iii) The need to express faith and beliefs, described as "participate in worship and prayers" and "approaching death". The comprehensive analyses revealed that the nurses believe the residents' spiritual needs were linked to the residents' previous sources of finding meaning, in relation to inter-personal, intra-personal and trans-personal dimensions in residents' lives. CONCLUSIONS: Nurses' and care workers' experiences of spiritual needs in people with dementia are very similar to the findings for the general population regardless of the severity of the dementia. The study's relevance to clinical practice indicates the importance of developing more knowledge about how people with dementia in nursing homes express spiritual needs and how to observe and interpret such needs.

Facing the challenge of adapting to a life 'alone' in old age: the influence of losses.

AIM: The aim of this study is to explore older people's approaches to living a life characterized by losses and 'aloneness' and how this relates to loneliness. BACKGROUND: Loneliness is closely related to social status and health condition. Older people are vulnerable to experiences of loneliness due to losses, which follow the ageing process. METHOD: A qualitative interpretative design was used. Older people, aged 65 and above, living at home, in retirement villages, or in long-term care settings in Australia, Norway, and UK participated. Seventy-eight persons were included. Data were collected through open-ended interviews during autumn of 2006 and spring of 2007. The interviews were audio taped, transcribed, and analysed applying a hermeneutic, interpretative process. FINDINGS: Analyses revealed great differences in the way participants handled their life situation. Interviewees describing themselves as 'not lonely' viewed losses as normal, and they participated in meaningful activities, connected to other people and thrived in their own company. Those describing themselves as 'lonely' on the other hand, strove to create meaning in their lives, were overwhelmed by losses, had problems finding meaningful activities and difficulty keeping up social relations. CONCLUSION: Loneliness was associated with overwhelming losses, inactivity, meaninglessness, and social isolation. The contrasting findings between 'not lonely' and 'lonely' older people have implications for nursing in that nurses must seek to identify those who need help in managing their loneliness and give guidance and support. More research is needed to develop interventions that are effective in reducing loneliness.

The double embarrassment: Understanding the actions of nursing staff in an unexpected situation.

A nursing home is a complex multifactorial environment that influences the decisions and actions of nursing staff. Many of the actions performed by nursing staff appear to be straightforward or simple because they are repetitive, encompassing everyday activities such as helping a resident to get up in the morning, shower or get dressed. These daily activities are usually performed smoothly as part of normal care. This article draws on ethnographic data from a study of caring practices in a nursing home with the aim of investigating how a seemingly ordinary, but unexpected, event can develop into a chaotic situation. Staff appeared to have difficulty managing the situation, and they seemed to be disorganized in the application of their skills. First, we describe the situation in detail before investigating and discussing the situation to provide a deeper understanding of the complexity of nursing home practice.

Variations in older persons' descriptions of the burden of loneliness.

Research indicates that approximately one-third of older people over the age of 65 years report loneliness, with even higher rates among those aged over 85. Loneliness is associated with a variety of health issues, such as depression, anxiety, physical impairment and social isolation. The purpose of this paper is to describe the characteristics of the burden of loneliness, and investigate the variability in how it is described by older. In-depth interviews were conducted with 12 older people in autumn 2006 and spring 2007 in Norway. Participants aged from 70 to 97 years were recruited from a variety of backgrounds, and varied in health status and social status. The findings reported in this paper are based on hermeneutic analyses of the interviews. Our findings indicate that some of the participants experienced loneliness that they felt able to manage. They experienced a fluctuating loneliness that was linked to feeling valuable and having power and energy. However, another group described experiences of agonising loneliness. They felt a present and extensive loneliness, together with feeling less valuable and lacking in power and initiative. They seemed trapped in their loneliness, and unable to overcome their situation themselves. Our findings indicate that the burden of loneliness is experienced differently. For some older persons, the experience of loneliness is so severe that they urgently need help to manage their situation.

New quality regulations versus established nursing home practice: a qualitative study.

BACKGROUND: Western governments have initiated reforms to improve the quality of care for nursing home residents. Most of these reforms encompass the use of regulations and national quality indicators. In the Norwegian context, these regulations comprise two pages of text that are easy to read and understand. They focus particularly on residents' rights to plan their day-to-day life in nursing homes. However, the research literature indicates that the implementation of the new regulations, particularly if they aim to change nursing practice, is extremely challenging. The aim of this study was to further explore and describe nursing practice to gain a deeper understanding of why it is so hard to implement the new regulations. METHODS: For this qualitative study, an ethnographic design was chosen to explore and describe nursing practice. Fieldwork was conducted in two nursing homes. In total, 45 nurses and nursing aides were included in participant observation, and 10 were interviewed at the end of the field study. RESULTS: Findings indicate that the staff knew little about the new quality regulations, and that the quality of their work was guided by other factors rooted in their nursing practice. Further analyses revealed that the staff appeared to be committed to daily routines and also that they always seemed to know what to do. Having routines and always knowing what to do mutually strengthen and enhance each other, and together they form a powerful force that makes daily nursing care a taken-for-granted activity. CONCLUSION: New regulations are challenging to implement because nursing practices are so strongly embedded. Improving practice requires systematic and deeply rooted practical change in everyday action and thinking.

Control as a Core Component of User Involvement in Reablement: A Qualitative Study.

BACKGROUND: Reablement, also known as restorative care, supports older adults in regaining or maintaining their independence in daily life through the optimization of functional ability. Users' goals and healthcare professionals' use of a "hands-off" approach are key, thus user involvement is central to reablement logic. The aim of this study was to explore user involvement in reablement from users' perspectives from the beginning of an intervention. METHODS: The study has an explorative qualitative design and includes thematic content analysis of data from repeat, individual semi-structured interviews with ten users accepting reablement intervention services in an urban Norwegian municipality. FINDINGS: Control emerged as a core component. Users handed control over their time and body to professionals, balanced by drawing on an inner strength to control own limits, retain the right to make own judgements and decisions, and dream. Five themes were seen: Positive, but with a "wait and see" attitude; Professionals have goals, users have dreams; Desire to control schedule and activity; Regaining faith in one's own capacity and strengthening one's dreams; and Keep going, hold on to your dreams. CONCLUSION: User involvement interpreted as user-set goals may be over-emphasized. Users possess the information that professionals need to set goals, consider these the goals important for professionals, and seek to facilitate professionals in their work. Based on a belief in own competence and a trust in professional's expertise, users invite professionals into a co-creation process. User involvement has previously been defined as a willingness and positive attitude toward reablement activities, but we find it can be expressed in different ways. Reablement logic does not always match users' understanding or desires, and it may be time to rethink user involvement in reablement. The reablement concept should be developed further, so that it better suits the individuals it should serve.

Active Care In Practice: Long-Term Experiences From An Education Programme.

PURPOSE: To explore whether the Active Care education programme has influenced the participants in practice over time and if so how. METHOD AND MATERIAL: A hermeneutic explorative approach. Semi-structured focus group interviews and individual interviews with participants from the education programme from 2014 to 2015. Participants came from different areas in care and had different professional backgrounds. Systematic text condensation analysis based on Malterud. RESULTS: The Active Care programme has given the participants new knowledge that motivated, inspired and gave them power to change their practice. The new knowledge seems to give resonance in their basic values and strengthens their understanding of the importance of the users' basic needs and right to be empowered. CONCLUSION: Active teaching methods that appeal to participants help to understand and expand carers' repertoire and increases professionalism across professions and positions. Structural factors need to be addressed to meet the goal of integrated person-centered services.

Implementing active care through (cultural) activities of daily living: A person-centred approach to achieve flourishing.

AIM: To investigate how participants in the Active Care education programme experienced using their obtained knowledge in practice. DESIGN: A narrative inquiry as described by Clandinin and Connelly. METHOD: A thematic analysis of 20 narratives written by participants in the education programme from 2015-2017. RESULTS: Three themes appeared to be dominant: the consequences of activity, relationships and positive emotions. These elements reflect the notion of flourishing.

A pilot study of how information and communication technology may contribute to health promotion among elderly spousal carers in Norway.

The objective of this pilot Norwegian intervention study was to explore whether use of information and communication technology (ICT) by informal carers of frail elderly people living at home would enable them to gain more knowledge about chronic illness, caring and coping, establish an informal support network and reduce stress and related mental health problems. Potential participants were close relatives of an elderly person with a diagnosis of a chronic illness dwelling in the same household who wished to continue caring for their relative at home, were 60 years of age or older, had been caring for less than 2 years, were a computer novice and had Norwegian as their first language. Nineteen elderly spousal carers participated in the study from two municipalities in eastern Norway. The project commenced in January 2004 and consisted of a multimethod evaluation model. Outcomes measured included carers' social contacts (measured by the Family and Friendship Contacts scale); burden of care (measured by the Relative Stress scale); and knowledge about chronic disease and caring, stress and mental health and use of ICT (examined via a composite carer questionnaire). These quantitative data were collected immediately prior to the study and at 12 months. Qualitative data were also collected via focus group interviews with participant carers at 7 months. At follow-up, quantitative measures did not reveal any reduction in carer stress or mental health problems. However, carers reported extensive use of the ICT service, more social contacts and increased support and less need for information about chronic illness and caring. Contact with and support from other carers with similar experiences was particularly valued by participants. The intervention also enhanced contacts with family and friends outside the carer network. Thus, it can be seen that ICT has the potential to contribute to health promotion among elderly spousal carers.

The meaning of slow nursing in dementia care.

Research literature in the dementia field lacks examples of 'best-practices' demonstrating concretely how it is possible to support the sense of coherence in people with dementia. The purpose of this study was to elucidate the nurses' views concerning a caring approach that may support the sense of coherence in people with dementia. The data were collected through participant observation and focus group interviews during a four-month period in 2011. Sixteen registered nurses recruited from two Norwegian nursing homes participated in this study. The data were interpreted using a phenomenological-hermeneutical method. Three themes were identified: 'being in the moment', 'doing one thing at a time', and 'creating joy and contentment'. An overall interpretation of these themes is described by the metaphor 'slow nursing', a caring approach that may lead to supporting the sense of coherence in people with dementia.

Residents' and caregivers' views on spiritual care and their understanding of spiritual needs in persons with dementia: A meta-synthesis.

Aims To synthesize research that investigated how residents and caregivers view spiritual care, come to understand the spiritual needs of people with dementia, and how caregivers provide care congruent with peoples' needs. Methods and study design Meta-synthesis using Noblit and Hare's meta-ethnography. A synthesis of eight qualitative, empirical, primary studies that explored spiritual care in the context of dementia care was performed. Findings Spiritual care for persons with dementia was described in the forms of (i) performing religious rituals that provides a sense of comfort and(ii) coming to know the person, which provides opportunities to understand a person's meaning and purpose, and (iii) attending to basic needs provides an opportunity to appreciate others' vulnerability and humanness. Conclusions Spiritual care intended to help persons with dementia to express their faith and religious beliefs, and help persons with dementia experience meaning in life, connectedness to self, God/deity and other persons.