The experience of self and threats to sense of self among relatives caring for people with Alzheimer's disease.

This study explored how the relatives of people with Alzheimer's disease expressed Self 2 and Self 3 according to Harré's social constructionist theory of selfhood. Having a relative with Alzheimer's disease affects one's life. In this study, we concentrated on how close relatives of people with Alzheimer's disease experienced their sense of self. This study was descriptive and qualitative. Interviews were conducted with 20 relatives of 10 people with Alzheimer's disease from 2009 to 2011. The data were analysed according to Harré's social constructionist theory of selfhood including Selves 2 and 3. Participants reported that Alzheimer's disease challenged their personal attributes, relations and positioning. Understanding how Alzheimer's disease affects the sense of self among close relatives is important, as this knowledge is pivotal for supporting these relatives who are often informal caregivers in ways that enable a fulfilling and meaningful life.

Drinking resumption: problematic alcohol use relapse after rehabilitation. A phenomenological hermeneutical perspective.

The majority of patients being treated for alcohol abuse disorders experience one or more relapses after treatment. The fact that people use this inebriant in a way leading to so much harm and suffering might seem a conundrum. Therapists, family and others might find the person's relapse to be dramatic and upsetting, and one might question whether the person has the sufficient will or motivation to change. However, few previous studies have explored relapse from the patient's perspective. The aim of this study was to illuminate the patient's lived experience of relapse and to develop a deeper understanding of this phenomenon. The study consisted of qualitative interviews using a phenomenological hermeneutical approach. Three main themes emerged from the analyses: 'craving', 'self-image' and 'time'. The findings were discussed in the context of phenomenological literature. Cravings could occur unpredictably; nevertheless, craving was a common experience for the patients and signified a risk of relapse. Bodily experiences of craving were frequently mentioned, and alcohol addiction could be understood as to be a disease or a learned habit. Self-image was, at times, adversely affected by relapse episodes. Therefore, feelings of shame, self-respect and recognition were significant concepts. This study found that the perception of time as past, present and future greatly influenced the participants' experiences of relapse and rehabilitation. Thus, relapse was an upsetting and dramatic experience that could cause great discomfort and sometimes life-threatening situations. However, relapse could also be viewed as a planned event. This study highlights important truth and reality about alcoholism and relapse grounded in people's lived experience.

Transitions in the Swedish school system and the impact on student's positive self-reported-health.

BACKGROUND: To explore three school based transitions and their impact on positive self-reported-health (SRH), pre-school to elementary school (6-10 y), elementary school to junior high school (10-13 y), and junior high school to upper secondary school/high school (13-16 y), in a long-term longitudinal population based study. METHODS: The study followed three cohorts through one school transition each. A longitudinal study with data from 6693 Health Dialogue questionnaires were used. Data were collected in the middle of Sweden during 2007-2012 with school children age 6-16 years old. RESULTS: Several significant factors were identified with an impact for a positive self-reported-health among children age 6-16 y; not feeling sad or depressed, afraid or worried, positive school environment (schoolyard and restrooms), not bullied, good sleep, daily physical activity and ability to concentrate. There was no single factor identified, the factors differed according to gender and age. CONCLUSION: The study have identified several gender and age specific factors for successful school transitions relevant for a positive SRH. This is valuable information for school staff, parents and school children and provides a possibility to provide support and assistance when needed.

Important quality aspects in the transfer process.

PURPOSE: Admission to and transfer from an intensive care unit affects not only the patient but also his or her relatives. The authors aimed to investigate relatives' perceptions of quality of care during a patient's transfer process from an intensive care unit to a general ward. DESIGN/METHODOLOGY/APPROACH: The study had a mixed method design that included quantitative data and answers to open questions. The participants were 65 relatives of patients who received care in an ICU. They were recruited from two hospitals in Sweden. FINDINGS: A majority perceived the transfer process as important, but analysis also showed that the participants rated it as an area for improvements. The relatives wanted participation, personal insight and control, respectful encounters, proximity, reassurance, continuous quality, reconnection and feedback. The relatives' participation in the transfer process was perceived as inadequate by 61 per cent, and the support that was received after the ICU discharge was perceived as inadequate by 53 per cent. The patients' length of stay in the ICU affected the relatives' perceptions of the quality of care. Overall, the relatives seemed to desire that the transfer process includes a continuous care, a competent staff, available information throughout the transfer process and personal involvement in the care, both before and after the transfer from the ICU. RESEARCH LIMITATIONS/IMPLICATIONS: The conclusion of this study is that relatives' needs and seeking for a well-planned ICU transitional process organisation with continuous quality before and after transfer, informational strategies that encourage the relatives to be involved and an organisation with competence throughout the healthcare chain are vital for quality. PRACTICAL IMPLICATIONS: The conclusion of this study is that relatives' needs and seeking for a well-planned ICU transitional process organisation with continuous quality before and after transfer, informational strategies that encourage the relatives to be involved and an organisation with competence throughout the healthcare chain are vital for quality. ORIGINALITY/VALUE: The findings have important implications for nursing and nursing management. A relative's perception of the quality of care before and after transfer from ICU may be a valuable source to evaluate the ICU transitional care.

Effects of an educational intervention for managing fatigue in women with early stage breast cancer.

PURPOSE: This randomized controlled trial of outpatients with breast cancer (stage I or II) evaluated the effects of a 3-week educational intervention on patient levels of fatigue. METHODS: Norwegian outpatients were randomized into an intervention group (n = 79) and a control group (n = 81). Women with fatigue (>2.5 on a 0-10 numeric rating scale, NRS) completed the Fatigue Questionnaire (FQ) and the Lee Fatigue Scale (LFS) at baseline (after treatment) (T1), immediately after intervention (T2) and 3 months after intervention (T3). RESULTS: The mean fatigue score (NRS) at study entry was 6.1 (SD 1.7) and 36% (n = 57) had a score ≥7. There were no statistically significant differences between the fatigue measures of women in the intervention and control group at T2 or T3 in the overall sample after the intervention. Using an NRS cut-off of 5, there was a borderline difference for women who scored <5 for chronic fatigue on FQ (p = 0.062) and a significant difference for energy on LFS (p = 0.042) where the women in the intervention group had less fatigue. Using an NRS cut-off score of 6, there was a borderline difference for women who scored <6 for fatigue on FQ (p = 0.062) and a significant difference for energy on LFS (p = 0.021) where women in the intervention group had more energy than those in the control group. CONCLUSIONS: Further research is needed to identify psycho-educational interventions to reduce levels of fatigue and to tailor an intervention based on the level of fatigue. Fatigue measurements should be chosen more carefully.

Working with 'hands-off' support: a qualitative study of multidisciplinary teams' experiences of home rehabilitation for older people.

BACKGROUND: There is a move towards the provision of rehabilitation for older people in their homes. It is essential to ensure that rehabilitation services promote independence of older people. AIM: The aim of the study was to explore multidisciplinary teams' experiences of home rehabilitation for older people. METHODS: Five focus groups were conducted with multidisciplinary teams based in a municipality in Sweden, covering seven different professions. In total, 28 participants volunteered to participate in these interviews. Interviews were transcribed verbatim and analysed according to content analysis. RESULTS: Two main categories, as well as four subcategories, emerged. The first main category, having a rehabilitative approach in everyday life, consisted of the subcategories: 'giving 'hands-off' support' and 'being in a home environment'. The second main category, working across professional boundaries, consisted of the subcategories: 'coordinating resources' and 'learning from each other'. CONCLUSION: Common goals, communication skills and role understanding contributed to facilitating the teams' performances of rehabilitation. A potential benefit of home rehabilitation, because the older person is in a familiar environment, is to work a rehabilitative approach into each individual's activity in their everyday life in order to meet their specific needs. At an organisational level, there is a need for developing services to further support older people's psychosocial needs during rehabilitation. IMPLICATIONS FOR PRACTICE: Team performance towards an individual's rehabilitation should come from an emerged whole and not only from the performance of a specific professional approach depending on the traditional role of each profession. A rehabilitative approach is based on 'hands-off' support in order to incorporate an individual's everyday activities as a part of their rehabilitation.

Perceptions of illness, lifestyle and support after an acute myocardial infarction.

After an acute myocardial infarction (AMI), people are encouraged to adopt a healthy lifestyle. But they are not always motivated to maintain the necessary lifestyle changes and need the right support to do it. In sparsely populated areas, people afflicted by an AMI have difficulty in finding standard rehabilitation programmes near their homes during the recovery, so they need alternative forms of support. The aim was to describe individual perceptions of their lifestyle and support, 1 year after an AMI, with or without mentorship. This study has a qualitative, descriptive design with data collected in individual interviews. Twenty men and women were interviewed 1 year after their first AMI, and 11 had been offered contact with mentors who had had an AMI. Content analysis was used to analyse the data. Those with and without mentors had similarities and tendencies to variation in their perceptions, with both a positive and negative view of life. The participants were aware of the necessity of living a healthy lifestyle but some resisted doing so. They wished to live as before, and all saw the future positively. Having a mentor with the same experience could be valuable for some people, but more research is needed to understand the lack of motivation to make beneficial lifestyle changes after a serious health event as AMI.

A qualitative study: perceptions of the psychosocial consequences and access to support after an acute myocardial infarction.

OBJECTIVES: The aim of this study was to describe individuals' perceptions of the psychosocial consequences of an acute myocardial infarction (AMI) and of their access to support one year after the event. METHODS: The study included 20 participants (14 men and six women) who lived in rural areas and had experienced their first AMI. Eleven were offered contact with a mentor. The participants were interviewed one year after their AMI. RESULTS: The findings are presented in three themes: having a different life, having to manage the situation and having access to support, with 11 subthemes. During their recovery, the participants experienced psychosocial consequences, consisting of anxiety and the fear of being afflicted again. Most mentees appreciated their mentor and some of those without mentors wished they had received organised support. Participants were often more dissatisfied than satisfied with the follow-up provided during recovery. CONCLUSIONS: After an AMI, follow-up is important during recovery, but the standardised information provided is inadequate. During recovery, people need help dealing with existential crises. After discharge, receiving peer support from lay people with similar experiences could be valuable. The knowledge gleaned from this study could be used in education at coronary care units and in health care outside the hospital setting.

Decreased risk for violence in patients admitted to forensic care, measured with the HCR-20.

AIM: The aim of this study was to explore if patients admitted to forensic psychiatric care decreased their assessed risk for violence over time, to identify patients who decreased their assessed risk for violence exceptionally well (30% or more) on the clinical (C) and risk management (R) scales in the (HCR-20), and to compare them in terms of demographic data. METHODS: The HCR-20 risk assessment instrument was used to assess the risk for violence in 267 patients admitted to a Swedish forensic psychiatric clinic between 1997 and 2010. Their assessments at admission were compared with a second, and most recent, risk assessment. RESULTS: The risk for violence decreased over time. Demographic criteria had no impact on differences on decreased risk. Only two factors, namely gender and psychopathy showed a difference. Risk factors associated with stress and lack of personal support were the items that turned out to be the most difficult to reduce. CONCLUSION: The results show that risk prevention in forensic care does work and it is important to continue to work with risk management. The study highlights the importance of a careful analysis of the patient's risk for violence in order to work with the patient's specific risk factors to reduce the risk.

Older family carers in rural areas: experiences from using caregiver support services based on Information and Communication Technology (ICT).

The aim of this intervention study was to illuminate the meaning of ICT-based caregiver support as experienced by older family carers living in vast rural areas, caring for a spouse at home. In order to access, the support service participants were provided with a computer and high speed Internet in their homes. Semi structured webcam-interviews were carried out with 31 family carers. A strategy for webcam interviewing was developed to ensure quality and create a comfortable interview situation for the family carers. Interviews were analysed using content analyses, resulting in the themes: Adopting new technology with help from others and Regaining social inclusion. The results indicate that ICT-based support can be valuable for older family carers in rural areas as it contributes to improve quality in daily life in a number of ways. In order to fully experience the benefits, family carers need to be frequent users of the provided support. Adequate training and encouragement from others were essential in motivating family carers to use the support service. Access to Internet and webcamera contributed to reducing loneliness and isolation, strengthening relationships with relatives living far away and enabled access to services no longer available in the area. Use of the ICT-service had a positive influence on the relationship between the older carer and adult grandchildren. It also contributed to carer competence and promote feelings of regaining independence and a societal role.

Living an unfamiliar body: the significance of the long-term influence of bodily changes on the perception of self after stroke.

The aim of this study is to illuminate the significance of the long-term influence of bodily changes on the perception of self after stroke by means of narrative interviews with 23 stroke survivors. A phenomenological-hermeneutic approach inspired by the philosophy of Merleau-Ponty and Ricoeur is the methodological framework. Zahavi's understanding of the embodied self and Leder's concept of dys-appearance along with earlier research on identity guide the comprehensive understanding of the theme. The meaning of bodily changes after stroke can be understood as living with an altered perception of self. Stroke survivors perceive their bodies as fragile, unfamiliar and unreliable and tend to objectify them. The weak and discomforting body that 'cannot' demands constant, comprehensive awareness to keep itself in play. These long-term and often permanent consequences of bodily weakness may turn stroke survivors' intentionality inwards, away from external activities and projects and relationships with others. Negative judgements from others are added to lost roles and positions and threaten the vulnerable self. Stroke survivors try to regain familiarity with their body by their life-long project of testing its boundaries. Mastering important tasks helps them strengthen their self-concept. Health care workers should be aware of the embodied self and engage in long-term dialogues with stroke survivors to strengthen positive perceptions of body and self. More research is needed to understand destructive post-stroke phenomena such as fatigue and pain and to find effective methods to help stroke survivors regain wholeness of body and self.

Changes in hope and health-related quality of life in couples following acute myocardial infarction: a quantitative longitudinal study.

BACKGROUND: Acute myocardial infarction (AMI) is a life-changing event that affects both the patient and the family and can have an influence on hope as well as HRQoL during the recovery period. AIMS: To compare self-rated scores of hope and health-related quality of life (HRQoL) 1, 7, 13 and 25 months, after an AMI with regard to (i) differences across time, and (ii) differences between patients and their partners. DESIGN: Explorative and longitudinal study. METHODS: In this nonrandomized study, Short Form 36 Health Questionnaire (SF-36) and Herth Hope Index-Swedish (HHI-S) questionnaires were completed by thirteen post-AMI patients and their partners. Data were collected on four occasions. RESULTS: In general, hope as well as HRQoL scores increased over time. A 2 (groups) × 4 (times) anova for mixed design showed significant changes in mental as well as in physical health over time but no significant effect of group on mental or physical health. Calculation of the minimum detectable change (MDC-index) for HHI-S and SF-36 revealed that scores between data collection points were not stable. conclusion: Our results show that although hope and HRQoL scores increased, only a few of the changes were statistically significant. Neither HHI-S nor SF-36 seems to measure stable states. Changes in hope and HRQoL levels may be due to participants striving to adapt to the current situation. RELEVANCE TO CLINICAL PRACTICE: These results can be used in the training of nursing staff to enhance their understanding of the significance of a family-centred approach after an AMI.

To reduce technology prior discharge from intensive care--important but difficult? A grounded theory.

AIM: The aim of this study was to provide a deeper understanding of the experience of intensive care staff regarding the reduction in the use of medical technology prior to patients' transfer from the ICU. BACKGROUND: The goal of ICU transitional care, provided for intensive care patients before, during and after the transfer from the ICU to another care unit, is to ensure minimal disruption and optimal continuity of care for the patient. To smooth this transition, there is a need to prepare for a less technological environment and therefore also a need for a gradual reduction in the use of monitoring equipment. METHOD: Group interviews and individual interviews, together with participant observations, were conducted with ICU staff in two hospitals in Sweden. The data were analysed using classic grounded theory. RESULTS: The main concern was the ICU staff's ambiguity regarding whether and how to reduce the use of medical technology devices. Insecurity about weaning patients from medical equipment combined with a lack of standardized routines made it difficult for staff to reduce the technical support. The core category describes how the ambiguity was solved primarily by 'prioritizing control'. However, this often caused the ICU staff to use advanced technology while the patients were in the ICU until the ward staff arrived, even if this should have been handled otherwise. Why and how the ICU staff used the strategy of 'prioritizing control' is further explained in the categories 'being affected by cultural/contextual aspects', 'searching for guidance and a shared understanding' and 'weighing advantages with more v s less technology'. CONCLUSION: It is important to consider ICU staff ambiguity concerning the reduction in technology and to establish strategies for a safe and structured transitional phase with step-down procedures in which technology and monitoring is gradually reduced prior to transfer from ICU.

In the middle and on the sideline: the experience of spouses of men with prostate cancer.

BACKGROUND: Spouses play an important role in how well patients with prostate cancer manage their illness. Whereas earlier studies mostly included both patients and spouses, this study focuses on the spouses' experiences during the course of the illness. OBJECTIVE: The objective of this study was to explore how the daily life of female spouses is affected by their husband's prostate cancer. METHODS: Qualitative interviews were conducted with 9 spouses of men receiving potential curative treatment for prostate cancer. RESULTS: Prostate cancer in men had significant impact on spouses' everyday life. The results showed that spouses strived to achieve a balance between focusing on their own needs and meeting their husbands' needs along the course of the illness. Four themes emerged: strong and optimistic versus vulnerable and overstrained, maintaining the partner's sense of manhood, being on the sideline, and the need for relationships outside the immediate family. CONCLUSION: Being a spouse to a man with prostate cancer is emotionally and practically demanding. There is a danger of the spouses suppressing their own needs in the process of supporting their husbands. Those spouses living in the situation over a period of years expressed fatigue and a shift in focus from their husbands' needs to their own needs for support. IMPLICATIONS FOR PRACTICE: Healthcare providers should provide support for spouses during the course of the illness, encourage spouses to participate in seminars for couples living with prostate cancer, and be aware of the potential for situational fatigue in spouses many years after the diagnosis.

Activity and participation in home rehabilitation: older people's and family members' perspectives.

OBJECTIVE: To explore the experiences of older people and their supporting family members in relation to home rehabilitation, with a focus on activity and participation. METHODS: Qualitative interviews were carried out with 6 older people and 6 family members at 1 and 6 months after the older person's discharge to their home. Qualitative content analysis of the data was carried out. The International Classification of Functioning, Disability and Health provides a guiding framework for rehabilitation. RESULTS: Informants' experiences of home rehabilitation contributed to the formation of 6 categories: (i) living with a frail body; (ii) striving for well-being in daily life; (iii) being close at hand; (iv) feeling dependent in daily life; (v) struggling to carry on; and (vi) striving to be at home. CONCLUSION: Older people's goals were to return to daily routines and to perform meaningful activities without feeling dependent on other people. Family members' participation was crucial. Psychosocial support and autonomy were essential for facilitating activity and participation. Healthcare professionals should consider each individual's unique experiences along with the significance of being at home.

How can nurses facilitate patient's transitions from intensive care?: a grounded theory of nursing.

OBJECTIVES: Intensive care patients often experience feelings of powerlessness and vulnerability when being transferred from an intensive care unit to a general ward. The aim of this study was to develop a grounded theory of nurses care for patients in the ICU transitional care process. METHODS: Group interviews, individual interviews and participant observations were conducted with nurses in two hospitals in Sweden and were analysed using grounded theory. RESULT: The substantive theory shows the process of nursing care activities - from the contexts of the ICU and the general ward. The main concern was to achieve a coordinated, strengthening, person-centered standard of care to facilitate patient transitions. The core category "being perceptive and adjustable" was a strategy to individualise, that was related to the other categories; "preparing for a change" and "promoting the recovery". However, the nurses were forced to "balance between patient needs and the caregivers' resources" and consequently were compromising their care. CONCLUSIONS: To facilitate an ICU-patient's transition, individual care planning is needed. It is also essential that the patients are adequately prepared for the change to facilitate the transitional care. Knowledge about transitional needs, empowerment and patient-education seems to be important issues for facilitating transitions.

The long-term experience of family life after stroke.

Stroke is a life-threatening and disabling illness known to have a significant impact on families. The purpose of this study was to illuminate the long-term experience of family life after stroke of stroke survivors and their spouses and children, particularly regarding marital and parent-child relationships. Thirty-seven narrative interviews were conducted with stroke survivors and their spouses and adult children who were minors at onset of the illness. A qualitative approach inspired by Gadamer's hermeneutic and van Manen's phenomenological understanding of lived experience was used. The analysis revealed four themes: the family as a lifebuoy, absent presence, broken foundations, and finding a new marital path. Lack of communication and altered roles and relationships endangered marital equilibrium and parent-child relationships after stroke. This study highlighted the need for professional family support as families were unprepared for the life changes that occurred. Nurses and other healthcare workers should examine family relationships and communication patterns and view the family as a unit composed of unique persons with different needs. Further research on the experiences of stroke survivors' children seems urgent.

Dealing with a troublesome body: a qualitative interview study of men's experiences living with prostate cancer treated with endocrine therapy.

PURPOSE: Endocrine therapy for prostate cancer causes substantial side effects, and previous studies have focused on the impacts on sexuality and masculinity. Little is known about how men experience bodily alterations in everyday life through the course of the prostate cancer and treatment. The aim of this study was to show how men with prostate cancer experience bodily changes and how these alterations influence daily life. METHOD: The study was conducted via qualitative interviews with a phenomenological hermeneutic approach. We interviewed ten men (aged 58-83) with prostate cancer who received endocrine therapy as the primary treatment method. RESULTS: The results showed that five themes were important for the men's experiences of their bodily alterations throughout the course of the illness: "something is 'wrong'", "when the body becomes troublesome", "to be well or to be ill", "dealing with the alterations" and "to talk about cancer and the intimate details". Initially, the shock of receiving a cancer diagnosis and the physical changes in their bodies were at the forefront of many patients' minds. Eventually, the impact of the side effects became more evident, which caused problems in everyday life. Yet, the men were able to reflect on the impact of treatment on their everyday lives. CONCLUSION: This study showed that hormone treatment has a significant influence, both directly and indirectly, on the bodies of prostate cancer patients. The experiences of men with prostate cancer may lead to feelings of loss of identity on an existential level.

The integration of chronic illness self-management.

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

Impact of environmental factors in home rehabilitation--a qualitative study from the perspective of older persons using the International Classification of Functioning, Disability and Health to describe facilitators and barriers.

PURPOSE: The aim of this study was to explore older people's experience of environmental factors that impact on their activity and participation in home rehabilitation. METHOD: Older people aged between 68 and 93 years and receiving home rehabilitation were interviewed. A qualitative content analysis was performed on the interview text using the predetermined structure of the International Classification of Functioning, Disability and Health (ICF) environmental domain. The text was linked to the closest ICF category. RESULTS: The results identified environmental facilitators and barriers that influenced activity and participation among older people receiving home rehabilitation. Approaches that provided a facilitative environment were access to assistive products and technologies, alterations to the physical environment, social support and relationships, and adjusted health and social care services. CONCLUSIONS: A qualitative study using ICF-listed environmental factors contributed a holistic view of facilitators and barriers in home rehabilitation for older people. Awareness of the importance of the impact of the social environment on activities and participation could improve home rehabilitation services for older people. The study represents an important step towards a holistic approach using the ICF, which aims to enable all health care professionals to describe, plan and evaluate rehabilitation services together with older people across the health and social care sectors.