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.

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.

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.

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.

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.

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.

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.

Symptoms of depression, sadness and sense of coherence (coping) among cognitively intact older people with cancer living in nursing homes-a mixed-methods study.

BACKGROUND: Symptoms of depression are often reported among patients with a cancer diagnosis. Strong sense of coherence (SOC) is shown to be associated with less depression in the general older population and among nursing homes (NH) residents in particular. Knowledge about mixed-methods perspectives that examine symptoms of depression and SOC among cognitively intact NH residents with cancer is scarce. AIM: To investigate symptoms of depression and SOC among NH residents who are cognitively intact and have cancer. METHODS: We used a quantitatively driven mixed-methods design with sequential supplementary qualitative components. We facilitated the collection of quantitative survey data of 60 NH residents (≥ 65 years) with cancer using the Geriatric Depression Scale (GDS) and SOC scale. The supplementary psychosocial component comprised qualitative research interviews about experiences related to depression with nine respondents from the same cohort. RESULTS: In fully adjusted multiple regression analysis of the sociodemographic variables, the GDS was significantly correlated with SOC (P < 0.001). The experience of sadness was identified by the following theme: sadness. Coping with the experience of symptoms of depression was dominated by coping with sadness. CONCLUSION: More than half the NH residents reported symptoms of depression, and the SOC was associated with reduced symptoms. A mixed-methods design contributed to nuanced and detailed information about the meaning of depression, and the supplementary component informs and supports the core component. To improve the situation of NH residents with cancer, more attention should be paid to the residents' experience of symptoms of depression and their SOC.

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.

Loneliness, loss, and social support among cognitively intact older people with cancer, living in nursing homes--a mixed-methods study.

BACKGROUND: Loneliness is a significant psychosocial effect following a cancer diagnosis and may prevent people from engaging in social activities, thus creating difficulties in interpersonal relationships. This study investigated loneliness and social support among cognitively intact nursing home residents with cancer by using a quantitatively driven mixed-methods design with sequential supplementary qualitative components. METHODS: The quantitative component consisted of face-to-face interviews of 60 nursing home residents (≥65 years) using the one-item Loneliness Scale and the Social Provisions Scale. The supplementary psychosocial component consisted of qualitative research interviews about experiences related to loneliness with nine respondents. RESULTS: The quantitative results indicated that reassurance of worth was associated with loneliness. The experience of loneliness was identified by the following: loneliness that was dominated by a feeling of inner pain, feeling of loss, and feeling small. Loneliness was alleviated by the following: being engaged in activities, being in contact with other people, and occupying oneself. CONCLUSION: Enhancing the lives of nursing home residents with cancer requires attending to the residents' experience of loneliness and social relationships in a targeted and individualized manner. This might require screening all nursing home residents for early detection of loneliness. Revealing factors that may contribute to or reduce loneliness improves the ability to enhance people's lives.

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.

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.

Implications of observing and writing field notes through different lenses.

BACKGROUND: From a philosophy of science perspective, the literature has posited that different research approaches influence field studies. Studies addressing interdisciplinary research have focused on the challenges of organizing and running interdisciplinary teams, cultural differences between and within disciplines, and constraints in conducting interdisciplinary research. Studies exploring and discussing the process and outcome of transferring observations to notes from an interdisciplinary point of view are not identified. The aim of this paper is to explore the characteristics of field notes created by researchers representing different disciplines and experiences. METHODS: A case study using a modified dynamic observation method was employed. The analyses were initiated by a researcher who had not been involved in the data collection. The field notes were analyzed using three main steps. RESULTS: The structures of both researchers' field notes were characterized by similarities in their descriptions, but the notes' foci and analytical levels differed. CONCLUSION: The findings contribute new insights concerning the execution of interdisciplinary observational studies. Our findings demonstrate that entering the field with different lenses produced richer and more varied data, providing a broader platform from which to discuss and interpret a study's findings. From a theoretical point of view, the findings enable a more nuanced discussion and a conceptual elaboration regarding how observational approaches should be pursued in future studies. On a practical level, the findings show that even if the researchers agree on what the overall focus in the observations should be, differences can occur in both their focus and analytical level throughout the study.

Family carers' experiences of attending a multicomponent psychosocial intervention program for carers and persons with dementia.

BACKGROUND: Psychosocial interventions for persons with dementia and their primary family carers are promising approaches to reducing the challenges associated with care, but, obtaining significant outcomes may be difficult. Even though carers in general are satisfied with such interventions, few studies have evaluated the interventions by means of qualitative methods. AIM: The objective of the study reported here was to investigate family carers' experiences of a multicomponent psychosocial intervention program, and also to offer advice on how to develop the intervention program. METHODS: Content analyses were taken from individual qualitative interviews conducted in 2012 with 20 carers (aged 50-82 years) who participated in a psychosocial intervention program that included education, individual and family counseling, and parallel group sessions for carers and persons with dementia. RESULTS: Two main categories emerged: 1) benefits of the intervention program, which sets out the informants' experiences for the benefits of participation, described in the subcategories "importance of content and group organization" and "importance of social support"; and 2) missing content in the intervention program, which details the informants' suggestions for future interventions, contained in the subcategories "need for extended content" and "need for new group organization". CONCLUSION: The carers found the interventions useful. The importance of even earlier and more flexible interventions for the family carers, the extended family, and the persons with dementia was underscored.

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.

"Like a dance": performing good care for persons with dementia living in institutions.

Dementia care is demanding, and health care workers can become emotionally exhausted and frustrated. Particularly, demanding aspects of dementia care include patient agitation and care-resistant behaviour. The aim of this study is to describe skilled staff's understanding of high-quality praxis in dementia care units in nursing homes. Eight nurses and care workers were individually interviewed, and a qualitative design was used. Participants were recruited from two nursing homes in two towns in eastern Norway. The data were analysed following the hermeneutic tradition inspired by Kvale. The analyses revealed three main findings describing good care: (a) to find: to identify the patient's personal characteristics, state, and needs, (b) to follow: to choose the right time and the tempo and to adapt to the patient's sensitivity, and (c) to lead: to be in the forefront and prepared and to change the patient's state. An overall interpretation of the findings is described by the metaphor of a dance between the patient and the caregiver.

When the struggle against dejection becomes a part of everyday life: a qualitative study of coping strategies in older abused people.

BACKGROUND: Abuse of older people is a serious issue and is associated with an increased risk of morbidity and mortality, and professionals will encounter elderly victims of abuse in all areas of the health care system. An important health determinant is behavioral factors, including coping style, which will impact on how older people manage stress and maintain control in their lives, and thereby protect themselves from abuse. The aim of this study was to explore the coping strategies elderly people abused by their offspring used to manage everyday life. METHODS: A qualitative approach was used and 14 elderly victims of abuse were interviewed. The interviews were recorded, transcribed, and subjected to qualitative content analysis. RESULTS: Five main coping strategies were identified. The main strategy was linked to the role of parent. Another prominent strategy was attitude towards being victimized. Further strategies were associated with hope for a better relationship with offspring in the future, while others felt that they had done the best they could, or that their offspring were no longer their responsibility. The results are discussed in light of theoretical perspectives related to coping and resilience. CONCLUSION: Abuse of older people by their offspring imposes severe stress on victims and challenges the values and beliefs about the caring nature of families. The findings of this study indicate that victims of abuse use a wide range of coping techniques to manage everyday life, and that some strategies help them to maintain their self-respect in their role as parents and find some sort of resilience.