Until death do us part Adult children's perspective of their parents' transition from living at home to moving into a nursing home and the time after death.

BACKGROUND: Adult children are often key carers of frail older parents providing care for a long period of time in different care contexts. However, research concerning adult children's caregiving experiences, from providing home-based care to facing the death of a parent in a nursing home is sparse. Thus, the aim was to explore the transition from living at home to moving into and living in a nursing home and the time after death from the perspective of next of kin to an older person. METHODS: A qualitative design using individual interviews with 15 adult children of older persons. The text was analysed using inductive content analysis. RESULTS: One main category was identified, until death do us part. With three generic categories, living at home, living at a nursing home and time after death, and eight sub-categories. The results describe the transition when an older person lives at home and moves into and lives in a nursing home and the time after death from the perspective of next of kin. CONCLUSION: This study highlights many examples of tasks that adult children provide over a long period of time and in different care contexts since they felt that professional care was unable to provide safe and secure care for their older parents. It also highlights the importance for staff to recognize the support that next of kin provide. Furthermore, the study reveal that staff do not offer the relief that they are obligated to provide, to enable next of kin coping with this strenuous transition in life. First after the parent died, there was time for relief since the worrying and the doing of practical things for the parent had stopped. TRIAL REGISTRATION: Current Controlled Trials NCT02708498 ; date of registration: 26 February 2016.

Experiences and Management of Incidents That Influence Sleep in Patients With Cardiovascular Disease and Insomnia.

BACKGROUND: Insomnia is a global problem and an important risk factor for patients living with cardiovascular disease (CVD), causing poor well-being and worsening disease prognosis. Yet, there is a lack of effective intervention strategies targeting sleep problems. To deliver patient-centered interventions and achieve good quality of sleep for this group, the own experiences of patients with CVD need to be understood. OBJECTIVE: The aim of this study was to describe experiences that influence the sleep situation and management of sleep problems among patients with CVD and insomnia. METHOD: A qualitative descriptive design with critical incident technique methodology was used. Twenty patients (13 men and 7 women; mean age, 73 years; range, 47-83 years) with single or multiple verified CVD diagnoses and insomnia were included. RESULTS: Four underlying categories of sleep disruptors were identified: cognitive, social, physical, and behavioral. Participants experienced distress from the heart condition at night, physically and cognitively, with high levels of concern about its consequences for themselves and their families. Participants' sleep management preferences and responses included cognitive, behavioral, and pharmacological management strategies. Participants preferred their own nonpharmacological insomnia management over professional advice. CONCLUSION: Patients with CVD and insomnia experienced both physical and cognitive distress from their heart condition and chose to adopt nonpharmacological insomnia management. Tailored professional support is needed to change precipitating behavioral factors to be able to treat insomnia, improve sleep, reduce symptom burden, and enhance quality of life.

The heart is a representation of life: an exploration of illness beliefs in couples living with atrial fibrillation.

AIMS AND OBJECTIVES: To explore illness beliefs in couples where one spouse has atrial fibrillation. BACKGROUND: Beliefs are the lenses through which we view the world, guiding our behaviour and constructing our lives. Couples evolve an ecology of beliefs from their interaction whereby their actions and choices arise from their beliefs. Atrial fibrillation is a common cardiac arrhythmia that has implications for both patients and partners. A couple's illness beliefs play an important role in convalescence and illness management, and no previous studies have explored illness beliefs in couples living with atrial fibrillation. DESIGN: A qualitative hermeneutic design. METHODS: Data collection constituted in-depth interviews with nine couples (patient and partner together). Hermeneutic philosophy as described by Gadamer was used to interpret and to understand illness beliefs in couples living with atrial fibrillation. RESULTS: The findings revealed both core illness beliefs and secondary illness beliefs. From the core illness belief 'The heart is a representation of life', two secondary illness beliefs were derived: atrial fibrillation is a threat to life and atrial fibrillation can and must be explained. From the core illness belief 'Change is an integral part of life', two secondary illness beliefs were derived: atrial fibrillation is a disruption in our lives and atrial fibrillation will not interfere with our lives. Finally, from the core illness belief 'Adaptation is fundamental in life', two secondary illness beliefs were derived: atrial fibrillation entails adjustment in daily life and atrial fibrillation entails confidence in and adherence to professional care. CONCLUSION: Couples' interaction has developed mutual illness beliefs regarding atrial fibrillation that guide them in their daily lives and influence their decisions. The adoption of a family-centred perspective in cardiovascular care settings is warranted.

Development of older men's caregiving roles for wives with dementia.

This secondary analysis of qualitative interviews describes how older Swedish men approach the caregiver role for a wife with dementia, over time. An increasing number of male caregivers will become primary caregivers for partners living with dementia at home, and they will likely be caregivers for an extended period of time. It has been stated that caregiving experiences influence how older men think of themselves. The theoretical starting point is a constructivist position, offering an understanding of older caregiving men's constructions and reconstructions of themselves and their caregiver roles. Seven men, who were cohabiting with their wives, were interviewed on up to five occasions at home during a 5- to 6-year period. The findings comprise three themes; me and it, me despite it, it is me, depict how these men gradually take on and normalise the caregiving tasks, and how they develop and internalise a language based on their caring activities. The results provide understanding about the relationship between men as caregivers and how this influences them as individuals. By careful attention to each caregiving man's individual needs rather than making gendered assumptions about men and caring, the aim of the caregiver support for men might best target men's own meaning to the caring in their the everyday practices.

Providing Palliative Care in a Swedish Support Home for People Who Are Homeless.

Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underserved and rarely encountered groups in palliative care settings. Instead, they often die in care places where palliative competence is not available. In this qualitative single-case study, we explored the conditions and practices of palliative care from the perspective of staff at a Swedish support home for homeless people. Interpretive description guided the research process, and data were generated from repeated reflective conversations with staff in groups, individually, and in pairs. The findings disclose a person-centered approach to palliative care, grounded in the understanding of the person's health/illness and health literacy, and how this is related to and determinant on life as a homeless individual. Four patterns shape this approach: building trustful and family-like relationships, re-dignifying the person, re-considering communication about illness and dying, and re-defining flexible and pragmatic care solutions.

Primary care patients with cardiovascular disease eligible for nurse-led internet-based cognitive behavioural therapy for insomnia: Characteristics and motives for participation.

AIM: To describe demographic, physical and psychological characteristics associated with insomnia in patients with cardiovascular disease (CVD) participating in nurse-led Internet-based cognitive behavioural therapy for insomnia (I-CBTI), and their motives and expectations regarding participation in I-CBTI. DESIGN: A mixed method design was applied, including primary care patients with angina pectoris, myocardial infarction, heart failure, atrial fibrillation and atrial flutter or arrhythmia in southern Sweden. METHODS: Data on demographics, insomnia severity and physical and psychological characteristics were collected through self-rated validated questionnaires (n = 126). Motives and expectations were collected through interviews (n = 19) and analysed using the 'personas' model. RESULTS: Physical symptoms and psychological characteristics were associated with insomnia. Three personas were identified: the pragmatist (a curious and optimistic persona), the philosopher (a problem-solving persona) and the philanthropist (an altruistic persona). Expectations were positive among the three personas, but comorbid conditions reduced the perceived ability to make necessary behavioural changes.

Being me and being us in a family living close to death at home.

We used interpretive description to describe how everyday life close to death was experienced and dealt with in families with one member who had a life-threatening illness. We performed 28 individual, couple, and group interviews with five families. We found two patterns, namely, "being me in a family living close to death" and "being us in a family living close to death." "Being me" meant that every individual in the family had to deal with the impending death, regardless of whether or not he or she was the person with the life-threatening illness. This was linked to ways of promoting the individual's self-image, or "me-ness." This pattern was present at the same time as the pattern of "being us," or in other words, being a family, and dealing with impending death and a new "we-ness" as a group. "Striving for the optimal way of living close to death" was the core theme.

Childrens' and young adults' perspectives of having a parent with dementia diagnosis: A scoping review.

BACKGROUND: Dementia is a key health issue worldwide. In Sweden, as in other European countries, most persons with dementia live in domestic settings and are often cared for by their family members. This scoping review aims to describe the perspectives of children and young adults with a parent diagnosed with dementia. Young family members may be alone and without support despite their high level of care burden. DESIGN AND METHODS: Three electronic databases (PubMed, Web of Science and PsycINFO) were used to search for English-language articles focusing on children and young adults between the ages of 6 and 34 who have a parent diagnosed with dementia. A thematic synthesis of the included articles was performed. FINDINGS: Sixteen original published qualitative studies were identified. These studies were categorised based on information about the authors, year of publication, study location, participants, aim of the study, data collection, analysis and main findings. Five main analytical themes were identified: (1) children and young adults identify changes in their parents' behaviour and personality, (2) children and young adults experience changed roles and relationships within the family, (3) children and young adults need to cope with an uncertain future, (4) children and young adults relate changes in their parent to their own mixed emotions and (5) children and young adults need help and seek it out but experience inadequate support. CONCLUSIONS: The children and young adults in the included studies seem to provide significant levels of care and support to their affected parent, which may affect their own health, social relations, community participation, employment, education, finances and sense of security. This means that it is important for health care systems and social services to identify barriers to these young family members' access to relevant care and support for themselves.

Iranian nurses' preparation for loss: finding a balance in end-of-life care.

AIM: To explore the nurse-patient interaction in terminally ill situations in acute care, focusing on the nurses' preparation for loss. BACKGROUND: Caring for dying patients can be a distressing and sometimes even threatening experience for nurses. Despite the vast body of literature on nurse/patient interaction and the quality of end-of-life care, few studies focus specifically on nurses' experience. DESIGN: A grounded theory approach was used to explore nurses' interaction with dying patients and their families and examine how nurses deal with situations in which the patient's death is inevitable. METHOD: Eighteen nurses were interviewed up to three times each at three teaching hospitals in Isfahan, Iran, during autumn 2006. A shortlist of possible participants was obtained by means of theoretical sampling and those who had experienced the death of patients and were able to express their feelings verbally were selected. RESULTS: The results clarified a core consideration: striking a balance between restorative and palliative care, information and hope, expectations and abilities and intimacy and distance. CONCLUSION: Attaining a balance in caring for dying patients is a major challenge to nurses: it concerns not only their interactions with patients and their families, but also their perceptions of themselves and their actions in end-of-life care. RELEVANCE TO CLINICAL PRACTICE: In end-of-life care, it is important for nurses to be able to change the focus of their care when the patient's condition is diagnosed as irreversible. They also need to be well equipped to maintain a balance, thereby preparing themselves for the patient's forthcoming death.

The Value of an Extensive Transrectal Repeat Biopsy with Anterior Sampling in Men on Active Surveillance for Low-risk Prostate Cancer: A Comparison from the Randomised Study of Active Monitoring in Sweden (SAMS).

BACKGROUND: A systematic repeat biopsy is recommended for men starting on active surveillance for prostate cancer, but the optimal number and distribution of cores are unknown. OBJECTIVE: To evaluate an extensive repeat transrectal biopsy with anterior sampling in men starting on active surveillance. DESIGN, SETTING, AND PARTICIPANTS: Randomised multicentre trial. From 2012 to 2016, 340 Swedish men, aged 40-75yr, with recently diagnosed low-volume Gleason grade group 1 prostate cancer were included. INTERVENTION: Either an extensive transrectal biopsy with anterior sampling (median 19 cores) or a standard transrectal biopsy (median 12 cores). OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: Primary outcome measure: Gleason grade group ≥2 cancer. SECONDARY OUTCOMES: Cancer in anteriorly directed biopsy cores and postbiopsy infection. Nonparametric statistical tests were applied. RESULTS AND LIMITATIONS: Gleason grade group ≥2 cancer was detected in 16% of 156 men who had an extensive biopsy and in 10% of 164 men who had a standard biopsy, a 5.7% difference (95% confidence interval [CI]-0.2% to 13%, p=0.09). There was a strong linear association between prostate-specific antigen (PSA) density and cancer in the anteriorly directed biopsy cores. The odds ratios for cancer in the anteriorly directed cores were for any cancer 2.2 (95% CI 1.3-3.9, p=0.004) and for Gleason grade group ≥2 cancer 2.3 (95% CI 1.2-4.4, p=0.015) per 0.1-ng/ml/cm3 increments. Postbiopsy infections were equally common in the two groups. A limitation is that magnetic resonance imaging was not used. CONCLUSIONS: The trial did not support general use of the extensive transrectal repeat biopsy template, but cancer in the anteriorly directed cores was common, particularly in men with high PSA density. The higher the PSA density, the stronger the reason to include anterior sampling at a systematic repeat biopsy. PATIENT SUMMARY: This trial compared two different templates for transrectal prostate biopsy in men starting on active surveillance for low-risk prostate cancer. Cancer was often found in the front part of the prostate, which is not sampled on a standard prostate biopsy.

The older patient's experience of encountering professional carers and close relatives during an acute confusional state: an interview study.

BACKGROUND: Acute confusional state (ACS) is a common and difficult condition among older patients with a variety of opinions about how to act when encountering patients with ACS. Few studies to our knowledge have been found exploring the encounter from the perspective of older patients and their experiences. OBJECTIVES: The aim of this study was to understand the experiences of older patients with ACS when encountering professional carers and close relatives. DESIGN: In order to understand older patients' experiences of encounters during their ACS a latent qualitative content analysis was used. SETTINGS: The data collection took place at two geriatric wards in an emergency hospital in a metropolitan area. PARTICIPANTS: The inclusion criteria included being aged 65 years or older and having suffered from ACS, according to the DSM-IV criteria, and having regained lucidity. Participants were being cared for at one of two geriatric wards. Patients diagnosed with dementia were excluded. About 150 patients were screened, 67 patients fulfilled the inclusion criteria and seven patients were included in the study, four females and three males, aged between 78 and 98 years. METHODS: Data were collected by interviews. RESULTS: Three themes were found, namely; 'Feeling lonely within the perceived reality of ACS', with three sub-themes: the unequal encounter, keeping a distance and being an outsider; 'striving towards understanding' with two sub-themes: searching for answers and it takes time to understand; and 'feelings of participation in the encounter' with two sub-themes: a mutual understanding and feeling safe and supported. CONCLUSIONS: Within the encounter the older patients with ACS are searching for answers to what is happening and why. The patients feel dependent on the persons they encounter and their willingness to understand and communicate. The patients also feel lonely, unnecessarily questioned and untrustworthy; but they can also feel safe, trusted and understood.

Posttraumatic Stress among Not-Exposed Traumatically Bereaved Relatives after the MS Estonia Disaster.

BACKGROUND: Little is known about posttraumatic stress (PTS) reactions in bereaved individuals following loss in disaster who were not directly exposed to disaster. The aim of the present study was to examine the course of PTS up to three years after losing relatives in the MS Estonia ferry disaster, one of the worst maritime disasters in modern times. METHODS: Seven postal surveys were sent out over three years post-disaster. The respondents were invited and added consecutively during the three years and 938 relatives participated in one or more of the surveys, representing 89% of the MS Estonia's Swedish victims. The survey included the Impact of Event Scale (IES) to measure PTS. Latent growth curve modeling was used to analyze PTS over time. RESULTS: The majority of bereaved individuals had high levels of PTS. At three years post-loss, 62% of the respondents scored above the recommended cut-off value on the IES. Over time, PTS symptoms declined, but initially high symptoms of PTS were associated with a slower recovery rate. CONCLUSION: The present finding suggests that being an indirectly-exposed disaster-bereaved close-relative can lead to very high levels of PTS which are sustained for several years.

Chores and sense of self: gendered understandings of voices of older married women with dementia.

BACKGROUND: Marital relationships in dementia are forged between the person with dementia and the care partner, and such relationships have an impact on the way in which dementia is understood and experienced. The everyday work that underpins the relationship is usually divided between spouses and based on traditional divisions of household chores. AIMS AND OBJECTIVES: The aim was to describe how older women with dementia express the importance of their homes and their chores in everyday life. METHODS: Seven women with dementia, who were cohabiting with their husbands, were interviewed on up to five occasions at home during a five-to-six-year period on the following themes: the home, their dementia illness, everyday life, their relationships with their husbands and dignity and autonomy. RESULTS: The qualitative analysis showed three different patterns in the women's narratives: keeping the core of the self through the home, keeping the self through polarising division of labour and keeping the self through (re-) negotiations of responsibilities. The feeling of one's home and home-related chores is an essential way to express who you are. CONCLUSION: The women stated that household chores are the centre of their lives despite their dementia disease and that the home, even though it shrinks, still makes the women see themselves as an important person, namely the 'competent wife'. IMPLICATIONS FOR PRACTICE: Nurses need to be aware that 'doing gender' may be a means of preserving personhood as well as of sustaining couplehood in dementia.

Moving into a care home: the role of adult children in the placement process.

Admission of an older person to a care home is widely recognised as a very stressful period for the family and one which, despite community care policy, is likely to be an increasingly common experience. Although there is a growing research base in this area, there have been few studies on the role of adult children in supporting their parents during this difficult transition. This paper reports on the third stage of a grounded theory study conducted in Sweden which explored the part played by adult children in the placement process. Data were collected from 13 adult children using in-depth semi-structured interviews and the results are compared with themes previously derived from interviews with 26 spouse carers. The analysis reveals important overlaps and differences and suggests the need for further research exploring the dynamics of the placement process.

First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care.

The aim of this study was to investigate first-line nursing home managers' views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested.

Experiences of long-term home care as an informal caregiver to a spouse: gendered meanings in everyday life for female carers.

AIMS AND OBJECTIVES: In this article, we explore the gender aspects of long-term caregiving from the perspective of women providing home care for a spouse suffering from dementia. BACKGROUND: One of the most common circumstances in which a woman gradually steps into a long-term caregiver role at home involves caring for a spouse suffering from dementia. Little attention has been paid to examining the experiences and motivations of such caregivers from a feminist perspective. METHODS: Twelve women, all of whom were informal caregivers to a partner suffering from dementia, were interviewed on the following themes: the home, their partner's disease, everyday life, their relationship and autonomy. The results of these interviews were analysed in relation to gender identity and social power structures using a feminist perspective. RESULTS: The findings of this study show that the informants frequently reflected on their caregiving activities in terms of both general and heteronormative expectations. The results suggest that the process of heteropolarisation in these cases can be an understood as a consequence of both the spouse's illness and the resulting caring duties. Also, the results suggest that the act of caring leads to introspections concerning perceived 'shortcomings' as a caregiver. Finally, the results indicate that it is important to recognise when the need for support in day-to-day caring is downplayed. CONCLUSIONS: Women view their caregiving role and responsibilities as paramount; their other duties, including caring for themselves, are deemed less important. We stress that the intense commitment and responsibilities that women experience in their day-to-day caring must be acknowledged and that it is important for healthcare professionals to find mechanisms for providing choices for female caregivers without neglecting their moral concerns. IMPLICATIONS FOR PRACTICE: Female carers face difficulties in always living up to gendered standards and this need to be considered when evaluating policies and practices for family carers.

The Study of Active Monitoring in Sweden (SAMS): a randomized study comparing two different follow-up schedules for active surveillance of low-risk prostate cancer.

OBJECTIVE: Only a minority of patients with low-risk prostate cancer needs treatment, but the methods for optimal selection of patients for treatment are not established. This article describes the Study of Active Monitoring in Sweden (SAMS), which aims to improve those methods. MATERIAL AND METHODS: SAMS is a prospective, multicentre study of active surveillance for low-risk prostate cancer. It consists of a randomized part comparing standard rebiopsy and follow-up with an extensive initial rebiopsy coupled with less intensive follow-up and no further scheduled biopsies (SAMS-FU), as well as an observational part (SAMS-ObsQoL). Quality of life is assessed with questionnaires and compared with patients receiving primary curative treatment. SAMS-FU is planned to randomize 500 patients and SAMS-ObsQoL to include at least 500 patients during 5 years. The primary endpoint is conversion to active treatment. The secondary endpoints include symptoms, distant metastases and mortality. All patients will be followed for 10-15 years. RESULTS: Inclusion started in October 2011. In March 2013, 148 patients were included at 13 Swedish urological centres. CONCLUSIONS: It is hoped that the results of SAMS will contribute to fewer patients with indolent, low-risk prostate cancer receiving unnecessary treatment and more patients on active surveillance who need treatment receiving it when the disease is still curable. The less intensive investigational follow-up in the SAMS-FU trial would reduce the healthcare resources allocated to this large group of patients if it replaced the present standard schedule.

Four aspects of self-image close to death at home.

Living close to death means an inevitable confrontation with one's own existential limitation. In this article, we argue that everyday life close to death embodies an identity work in progress. We used a narrative approach and a holistic-content reading to analyze 12 interviews conducted with three persons close to death. By illuminating the unique stories and identifying patterns among the participants' narratives, we found four themes exemplifying important aspects of the identity work related to everyday life close to death. Two of the themes, named "Inside and outside of me" and "Searching for togetherness," represented the core of the self-image and were framed by the other themes, "My place in space" and "My death and my time." Our findings elucidate the way the individual stories moved between the past, the present, and the future. This study challenges the idea that everyday life close to impending death primarily means limitations. The findings show that the search for meaning, new knowledge, and community can form a part of a conscious and ongoing identity work close to death.

From alert commander to passive spectator: older male carers' experience of receiving formal support.

Aim. The aim was to describe older male carers' experience of receiving formal support. Background. To older male carers, creating new roles seems to be important. Their need for support in their caregiving is poorly understood. Design. A qualitative approach with a critical perspective on men and masculinities was used. Participants. Focus groups comprising a total of 11 men were used. Methods. Qualitative content analysis was adopted. Results. Three categories of response were found: 'using ad hoc solutions for maintaining a protective environment', 'coping but being left behind' and 'recapturing the caregiving role'. Discussion. Not only the quantity of support services offered to older male carers but also their quality dimension, based on a genuine understanding of the men's support needs, must be addressed. Conclusions. Professional caregivers attempt to relieve the men of their care obligations entirely. A reciprocal arrangement involving the men as partners, instead, may help them to regard their caring experience as valuable, which is important to their self-image. Relevance to clinical practice. These men's socially based networks need to be recognized by professional caregivers as important, to reframe the men's identity and notion of masculinity.

Transitions in men's caring identities: experiences from home-based care to nursing home placement.

Objectives. The aim of this study is to describe, from a gender identity perspective, the experiences of older men involved in the process of caring for a partner at home and the placement into a nursing home. Background. Few studies have paid attention to the importance of gender when considering the social experiences of older men providing care for an ill spouse and finally placing a partner in a nursing home. Further understanding is much needed of how older men experience the process of caring for a spouse from a gender identity perspective. Design. A qualitative constructivist approach was adopted for this study. Participants. Data consists of interviews with seven men that have been informal carers and experienced the placement of their wife in a nursing home. Methods. Interviews were analysed with a constructivist approach. Results. The results indicate that men go through two transitions in their gender identity during the caregiving process and placement. From the mutual loving relationship of being a loving husband, the social responsibility of daily care of their wives changes the situation into that of being a caring husband, and finally with the move to a nursing home there is a transition from intimate care to a relationship based on friendship. Conclusions. The results show that older caregiving men undergo a process involving a reconstruction of gender identity. To formally recognize men's caring activities and to make them sustainable, we believe that men in an informal caring relationship need support. Relevance to clinical practice. Nurses need to recognize the identity struggles resulting in sadness and suffering that are related to changes in men's lives during the caregiving process. Understanding the dynamics and changes that occur when men take on a caring task is important for the development of their role as carers.