"Being the main character but not always involved in one's own care transition" - a qualitative descriptive study of older adults' experiences of being discharged from in-patient care to home.

BACKGROUND: The growing number of older adults with chronic diseases challenges already strained healthcare systems. Fragmented systems make transitions between healthcare settings demanding, posing risks during transitions from in-patient care to home. Despite efforts to make healthcare person-centered during care transitions, previous research indicates that these ambitions are not yet achieved. Therefore, there is a need to examine whether recent initiatives have positively influenced older adults' experiences of transitions from in-patient care to home. This study aimed to describe older adults' experiences of being discharged from in-patient care to home. METHODS: This study had a qualitative descriptive design. Individual interviews were conducted in January-June 2022 with 17 older Swedish adults with chronic diseases and needing coordinated care transitions from in-patient care to home. Data were analyzed using inductive qualitative content analysis. RESULTS: The findings indicate that despite being the supposed main character, the older adult is not always involved in the planning and decision-making of their own care transition, often having poor insight and involvement in, and impact on, these aspects. This leads to an experience of mismatch between actual needs and the expectations of planned support after discharge. CONCLUSIONS: The study reveals a notable disparity between the assumed central role of older adults in care transitions and their insight and involvement in planning and decision-making.

Entangled in complexity: An ethnographic study of organizational adaptability and safe care transitions for patients with complex care needs.

AIM: The aim of this study was to visualize vulnerabilities and explore the dynamics of inter-professional collaboration and organizational adaptability in the context of care transitions for patients with complex care needs. DESIGN: An ethnographic design using multiple convergent data collection techniques. METHODS: Data collection involved document review, participant observations and interviews with healthcare and social care professionals (HSCPs). Narrative analysis was employed to construct two illustrative patient scenarios, which were then examined using the Functional Resonance Analysis Method (FRAM). Thematic analysis was subsequently applied to synthesize the findings. RESULTS: Inconsistencies in timing and precision during care transitions pose risks for patients with complex care needs as they force healthcare systems to prioritize structural constraints over individualized care, especially during unforeseen events outside regular hours. Such systemic inflexibility can compromise patient safety, increase the workload for HSCPs and strain resources. Organizational adaptability is crucial to managing the inherent variability of patient needs. Our proposed 'safe care transition pathway' addresses these issues, providing proactive strategies such as sharing knowledge and increasing patient participation, and strengthening the capacity of professionals to meet dynamic care needs, promoting safer care transitions. CONCLUSION: To promote patient safety in care transitions, strategies must go beyond inter-professional collaboration, incorporating adaptability and flexible resource planning. The implementation of standardized safe care transition pathways, coupled with the active participation of patients and families, is crucial. These measures aim to create a resilient, person-centred approach that may effectively manage the complexities in care transitions. IMPLICATIONS: The recommendations of this study span the spectrum from policy-level changes aimed at strategic resource allocation and fostering inter-professional collaboration to practical measures like effective communication, information technology integration, patient participation and family involvement. Together, the recommendations offer a holistic approach to enhance care transitions and, ultimately, patient outcomes. REPORTING METHOD: Findings are reported per the Consolidated Criteria for Reporting Qualitative research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Supporting patients with venous leg ulcers in self-care monitoring: an interview study with primary health care professionals.

OBJECTIVE: This study described the experiences and perceptions of how primary health care professionals (PHCPs) support patients with venous leg ulcers (VLUs) in self-care monitoring. DESIGN: A qualitative approach with reflexive thematic analysis was used, with 24 individual qualitative open interviews. SETTING: Primary health care clinics and community health care in four southern regions in Sweden. SUBJECTS: Registered nurses, district nurses and nurse assistants who had experience of caring for patients with VLUs. In total, 24 interviews were conducted with PHCPs in Sweden. RESULTS: PHCPs have a vital role in promoting patient independence and responsibility, identifying needs and adapting care strategies, while also recognising unmet needs in patients with VLUs. CONCLUSION: PHCPs actively monitor patients' self-care and establish caring relationships. They see a need for a structured primary health care work routine for ulcer management.

PHCPs described encouraging patients by identifying needs, adapting care and promoting self-care monitoring using various skills and strategies.PHCPs described unmet needs and insufficient care practices for patients with VLUs.PHCPs pointed out the importance of establishing caring relationships in order to involve patients in their VLU treatment.

Delineating and clarifying the concept of self-care monitoring: a concept analysis.

AIM: To delineate and clarify the meaning of the concept of self-care monitoring from a patient perspective. METHODS: A systematic search was performed in the databases ASSIA, CINAHL, PsycInfo, and PubMed (January 2016-September 2021). A selection of 46 peer-reviewed articles was included in the study and analysed using Rodgers' Evolutionary Method for Concept Analysis. RESULTS: The following four attributes were identified: Tracking symptoms, signs, and actions, Paying attention, Being confident, and Needing routines, creating a descriptive definition: "Self-care monitoring is an activity that means a person has to pay attention and be confident and needs routines for tracking symptoms, signs, and action." The antecedents of the concept were shown to be Increased knowledge, Wish for independence, and Commitment. The concepts' consequences were identified as Increased interaction, Perceived burden, and Enhanced well-being. CONCLUSIONS: This concept analysis provides extensive understanding of self-care monitoring from a patient perspective. It was shown that the concept occurs when a person practices self-care monitoring at home either with or without devices. A descriptive definition was constructed and presented with exemplars to encourage practice of the concept in various healthcare settings and could be of relevance to people with chronic illnesses or other long-term conditions.

Nurses and global health responsibility: In light of the COVID-19 pandemic and the war in Ukraine.

AIM: The aim of this paper was to reflect on global ethical challenges for nurses in light of the COVID-19 pandemic and the war in Ukraine and to discuss 'Nurses and Global Health', a new element in the revised ICN Code of Ethics for Nurses, 2021, and its implications for nurses. BACKGROUND: The authors participated in the latest revision of the Code. When we were revising the ICN Code of Ethics, there was neither an ongoing pandemic nor a war in Europe. SOURCES OF EVIDENCE: Relevant scientific articles and other academic literature, documents from international organisations, and authors' views. DISCUSSION: The discussion emanated from our reflections on how to actually apply the ICN Code of Ethics, i.e., moving the words from the document itself into everyday practice, in light of the COVID-19 pandemic and the war in Ukraine. In the Code, the nurse's responsibility is highlighted, but there is little or no instruction on how to undertake it. CONCLUSION AND IMPLICATIONS FOR NURSES: The ICN Code of Ethics needs to be operationalised through ethical reflection and discussion in all contexts where nurses work, from policy level to the care environment.

Registered nurses' efforts to ensure safety for home-dwelling older patients.

BACKGROUND: The international development of health care, an ageing population and rapid technical development mean that more care is being performed in patient homes. This care environment is often unpredictable and involves both formal and informal caregivers, making it potentially unsafe. There is sparse knowledge about how patient safety is protected in home health care in Sweden and how registered nurses work to prevent risks and promote safe care. AIM: The aim of the study was to explore registered nurses' efforts to reduce perceived risks for home-dwelling older patients and ensure safe home health care. METHOD: We used a qualitative design with individual interviews with 13 registered nurses working in municipalities in southeast Sweden. The narratives were analysed with inductive content analysis. FINDINGS: The findings showed that the registered nurses tried to secure a safe care environment and took an active role in care, striving to stay one step ahead of the patient. These three types of efforts are likely interdependent, suggesting they are all needed to reduce perceived risks for home-dwelling older patients and ensure patient safety in home health care. CONCLUSIONS: It is a challenge for registered nurses to maintain patient safety when performing care in patient homes. Continuity of care is required and must be based not only on self-reliance among registered nurses but also on trusting relationships with patients, next of kin, colleagues and other personnel, as well as on the development of organisational conditions adapted to patient needs.

The Meaning of Surviving Three Years after a Heart Transplant-A Transition from Uncertainty to Acceptance through Adaptation.

The rationale was to longitudinally follow-up interviews performed with heart recipients at their one-year examination in order to deepen the understanding of the meaning of surviving a heart transplant. The aim was to explore the meaning of surviving three years after a heart transplant compared to one year and to identify what constitutes the change process. A phenomenological-hermeneutic method was used. This multicenter study was carried out at the two hospitals in Sweden where heart transplants are performed. A total of 13 heart recipients who survived three years after a heart transplant were invited to participate in this three-year follow-up study and 12 accepted, 3 women and 9 men, with a mean age of 51.25 years. The naïve understanding revealed that the heart recipients strongly accepted their life situation and that time had enabled this acceptance of limitations through adaptation. The thematic structural analyses cover six themes illustrating the meaning of acceptance and adaptation, i.e., accepting life as it is, adapting to post-transplant limitations, adapting to a changed body, social adaptation, showing gratitude and trusting oneself and others. In conclusion, achieving acceptance and a solid sense of self-efficacy after heart transplantation is a time-consuming process that involves courage to face and accept the reality and adapt in every life dimension.

Using Mobile Health and the Impact on Health-Related Quality of Life: Perceptions of Older Adults with Cognitive Impairment.

Digital health technologies such as mobile health (mHealth) are considered to have the potential to support the needs of older adults with cognitive impairment. However, the evidence for improving health with the use of mHealth applications is of limited quality. Few studies have reported on the consequences of technology use concerning the older adults' quality of life. The purpose of this study was to describe perceptions of mHealth and its impact on health-related quality of life (HRQoL) among older adults with cognitive impairment. The study was conducted using a qualitative design with a phenomenographic approach. A total of 18 older participants with cognitive impairment were interviewed. The interviews were analyzed in order to apply phenomenography in a home-care context. The results showed variations in the older adults' perceptions that were comprised within three categories of description; Require technology literacy, Maintain social interaction, and Facilitate independent living. In conclusion, the development and design of mHealth technologies need to be tailored based on older adults´ needs in order to be understood and perceived as useful in a home-care context. For mHealth to support HRQoL, healthcare should be provided in a way that encourages various forms of communication and interaction.

Health-related quality of life and related factors among a sample of older people with cognitive impairment.

AIM: This study aimed to identify factors affecting health-related quality of life (HRQoL) of older adults with cognitive impairment and to describe the association of these factors with different components of HRQoL. DESIGN: A cross-sectional, descriptive research design was used. METHODS: Data were collected from 247 individuals aged 60 years and older from a Swedish longitudinal cohort study. The Short-Form Health Survey-12 (SF-12) and EuroQol (EQ-5D) were used to assess HRQoL. The data were analysed using descriptive and comparative statistics. RESULTS: The present study identified several factors that influenced HRQoL of older adults with cognitive impairment. The results of a multiple logistic regression analysis revealed that the following factors were associated with physical and mental HRQoL: dependency in activities of daily living (ADL), receiving informal care and feelings of loneliness and pain.

Patient autonomy in a high-tech care context-A theoretical framework.

AIMS AND OBJECTIVES: To synthesise and interpret previous findings with the aim of developing a theoretical framework for patient autonomy in a high-tech care context. BACKGROUND: Putting the somewhat abstract concept of patient autonomy into practice can prove difficult as when it is highlighted in healthcare literature, the patient perspective is often invisible. Autonomy presumes that a person has experience, education, self-discipline and decision-making capacity. Reference to autonomy in relation to patients in high-tech care environments could therefore be considered paradoxical, as in most cases, these persons are vulnerable, with impaired physical and/or metacognitive capacity, thus making extended knowledge of patient autonomy for these persons even more important. DESIGN: Theory development. METHODS: The basic approaches in theory development by Walker and Avant were used to create a theoretical framework through an amalgamation of the results from three qualitative studies conducted previously by the same research group. RESULTS: A theoretical framework-the control-partnership-transition framework-was delineated disclosing different parts cocreating the prerequisites for patient autonomy in high-tech care environments. Assumptions and propositional statements that guide theory development were also outlined, as were guiding principles for use in day-to-day nursing care. Four strategies used by patients were revealed as follows: the strategy of control, the strategy of partnership, the strategy of trust and the strategy of transition. CONCLUSIONS: An extended knowledge base, founded on theoretical reasoning about patient autonomy, could facilitate nursing care that would allow people to remain/become autonomous in the role of patient in high-tech care environments. RELEVANCE TO CLINICAL PRACTICE: The control-partnership-transition framework would be of help in supporting and defending patient autonomy when caring for individual patients, as it provides an understanding of the strategies employed by patients to achieve autonomy in high-tech care contexts. The guiding principles for patient autonomy presented could be used in nursing guidelines.

Befriending Everyday Life When Bringing Technology Into the Private Sphere.

We present the findings of our phenomenological interview study concerning the meaning of being an autonomous person while dependent on advanced medical technology at home. This was elucidated in the participants' narratives as befriending everyday life when bringing technology into the private sphere. We discovered four constituents of the phenomenon: befriending the lived body, depending on good relationships, keeping the home as a private sphere, and managing time. The most important finding was the overall position of the lived body by means of the illness limiting the control over one's life. We found that the participants wanted to be involved in and have influence over their care to be able to enjoy autonomy. We therefore stress the importance of bringing the patients into the care process as chronic illness will be a part of their everyday life for a long time to come, hence challenging patient autonomy.

A trajectory towards partnership in care--Patient experiences of autonomy in intensive care: A qualitative study.

OBJECTIVE: The aim of this study was to describe and elucidate patient experiences of autonomy in an intensive care context from a caring perspective. BACKGROUND: Patients in intensive care units (ICUs) are critically ill and in a dependent and vulnerable position. There is thus a risk of staff taking command not only of the patients' vital functions but also of their decision-making. METHODS: A qualitative design was selected. Individual interviews were conducted with 11 adult patients with an intensive care episode of two days or more at six Swedish ICUs. The data were analysed using Inductive Content Analysis. FINDINGS: Patient autonomy in intensive care was shown to be 'A trajectory towards partnership in care depending on state of health and mutual understanding'. It was experienced through acknowledged dependence, being recognised as a person, invited participation and becoming a co-partner in care. CONCLUSION: Patients in need of intensive care wanted to be involved in making decisions about their care as this creates a trusting and healthy care environment. Greater awareness is required about the ICU patient not only being a passive care recipient but also an active agent and where involvement in decision-making and participation in care are crucial.

Concept analysis: patient autonomy in a caring context.

AIM: This paper is a report of an analysis of the concept of patient autonomy BACKGROUND: Many problems regarding patient autonomy in healthcare contexts derive from the patient's dependent condition as well as the traditional authoritarian position of healthcare professionals. Existing knowledge and experience reveal a lack of consensus among nurses regarding the meaning of this ethical concept. DESIGN: Concept analysis. DATA SOURCES: Medline, CINAHL, The Cochrane Library and PsycINFO were searched (2005-June 2013) using the search blocks 'autonomy', 'patient' and 'nursing/caring'. A total of 41 articles were retrieved. REVIEW METHODS: The Evolutionary Method of Concept Analysis by Rodgers was used to identify and construct the meaning of the concept of patient autonomy in a caring context. RESULTS: Five attributes were identified, thus creating the following descriptive definition: 'Patient autonomy is a gradual, time-changing process of (re-)constructing autonomy through the interplay of to be seen as a person, the capacity to act and the obligation to take responsibility for one's actions'. Patient vulnerability was shown to be the antecedent of patient autonomy and arises due to an impairment of a person's physical and/or mental state. The consequences of patient autonomy were discussed in relation to preserving control and freedom. CONCLUSION: Patient autonomy in a caring context does not need to be the same before, during and after a care episode. A tentative model has been constructed, thus extending the understanding of this ethical concept in a caring context.

Effects of omega-3 fatty acids on inflammatory markers in cerebrospinal fluid and plasma in Alzheimer's disease: the OmegAD study.

BACKGROUND: omega-3 fatty acids (omega-3 FAs) found in dietary fish or fish oils are anti-inflammatory agents that may influence Alzheimer's disease (AD). OBJECTIVE: To study the effects of dietary omega-3 FA supplementation on inflammatory markers in cerebrospinal fluid (CSF) and plasma from patients with mild to moderate AD. METHODS: Thirty-five patients (70.3 +/- 8.2 years) were randomized to a daily intake of 2.3 g omega-3 FAs or placebo for 6 months. The inflammatory markers interleukin (IL)-6, tumour necrosis factor-alpha and soluble interleukin-1 receptor type II (sIL-1RII) were analysed in CSF and plasma at baseline and at 6 months. The AD markers tau-protein, hyperphosphorylated tau-protein and beta-amyloid (Abeta(1-42)) were assessed in CSF. High-sensitivity C-reactive protein was assessed in plasma. A possible relation to the APOE genotype was investigated. RESULTS: There was no significant treatment effect of omega-3 FAs on inflammatory and AD biomarkers in CSF or on inflammatory markers in plasma, nor was there any relation with APOE. A significant correlation was observed at baseline between sIL-1RII and Abeta(1-42) levels in CSF. CONCLUSIONS: Treatment of AD patients with omega-3 FAs for 6 months did not influence inflammatory or biomarkers in CSF or plasma. The correlation between sIL-1RII and Abeta(1-42) may reflect the reciprocal interactions between IL-1 and Abeta peptides.

Inflammation in the nervous system--physiological and pathophysiological aspects.

There is ample evidence for the occurrence of inflammatory processes in most major neurodegenerative disorders, both in acute conditions such as traumatic brain injury and stroke, and in chronic disorders such as Alzheimer's disease, epilepsy, amyotrophic lateral sclerosis and Parkinson's disease. Studies on inflammatory factors such as pro- and antiinflammatory cytokines in experimental models of neurodegenerative disorders suggest that they are not merely bystanders, but may be involved in the neurodegenerative process. In addition, there are findings indicating that inflammatory factors may have beneficial effects on the nervous system, particularly during development of the nervous system. The challenge is to understand when, where and during which circumstances inflammation and inflammatory factors are positive or negative for neuronal survival and functioning. Some of our studies on cytokines, particularly the interleukin-1 system, are summarised and discussed in relation to neurodegeneration, cognition, and temperature changes.

Cytokine production by a human microglial cell line: effects of beta-amyloid and alpha-melanocyte-stimulating hormone.

Senile plaques in the Alzheimer's disease (AD) are formed by aggregation of beta-amyloid (Abeta) peptide. Abeta peptide has been shown to activate microglia and stimulate their production of inflammatory factors, such as cytokines. In the AD brain, the continued presence of amyloid plaques may keep microglia persistently activated, leading to chronic inflammation in the CNS. It is well established that alpha-melanocyte-stimulating hormone (alpha-MSH) gives rise to anti-inflammatory and anti-pyretic effects. The biological activities of alpha-MSH are mediated by one or more of the melanocortin receptor (MCR) subtypes, i.e. MCR1 - MCR5. The aim of the present study was to determine the effect of alpha-MSH alone and on Abeta-activated microglial cells with regard to the secretion of inflammatory cytokines, such as interleukin-6 (IL-6), and to determine which receptor subtype mediates the effects of alpha-MSH. The human microglial cell line, CHME3, was incubated for 24 h with freshly dissolved Abeta(1-40), interferon-gamma (IFN-gamma) and/or alpha-MSH. Freshly dissolved Abeta(1-40) (5-60 microM) resulted in a dose-dependent decrease in cell viability, along with a dose-dependent increase in IL-6 release. Neither IFN-gamma nor alpha-MSH affected the Abeta-induced secretion of IL-6, but resulted in a dose-dependent increase in basal IL-6 release. Agouti, the endogenous antagonist of MCR1 and 4, further increased the alpha-MSH-induced secretion of IL-6. RT-PCR showed the expression of MCR1, MCR3, MCR4 and MCR5 mRNA. The combined data suggest that the effect of alpha-MSH in increasing IL-6 release from the human microglial cell line is mediated by MCR3 or MCR5.

Effects of statins on microglia.

High serum cholesterol level has been shown as one of the risk factors for Alzheimer's disease (AD), and epidemiological studies indicate that treatment with cholesterol-lowering substances, statins, may provide protection against AD. An acute-phase reaction and inflammation, with increased levels of proinflammatory cytokines, are well known in the AD brain. Notably, there is evidence for antiinflammatory activities of statins, such as reduction in proinflammatory cytokines. Consequently, it is of interest to analyze the effects of statins on microglia, the main source of inflammatory factors in the brain, such as in AD. The aims of this study were to determine the effects of statins (atorvastatin and simvastatin) on microglial cells with regard to the secretion of the inflammatory cytokine interleukin-6 (IL-6) and cell viability after activation of the cells with bacterial lipopolysaccharides (LPS) or beta-amyloid1-40 (Abeta1-40) and in unstimulated cells. Cells of the human microglial cell line CHME-3 and primary cultures of rat neonatal cortical microglia were used. Incubation with LPS or Abeta1-40 induced secretion of IL-6, and Abeta1-40, but not LPS, reduced cell viability. Both atorvastatin and simvastatin reduced the basal secretion of IL-6 and the cell viability of the microglia, but only atorvastatin reduced LPS- and Abeta1-40-induced IL-6 secretion. Both statins potentiated the Abeta1-40-induced reduction in cell viability. The data indicate the importance of also considering the microglial responses to statins in evaluation of their effects in AD and other neurodegenerative disorders with an inflammatory component.

Beta-amyloid protein structure determines the nature of cytokine release from rat microglia.

Activated microglia represent a major source of inflammatory factors in Alzheimer's disease and a possible source of cytotoxic factors. beta-Amyloid (Abeta) peptide, the predominant component in amyloid plaques, has been shown to activate microglia and stimulate their production of inflammatory factors. The present study was performed to analyze the responses of microglia to different forms of Abeta, with regard to release of the proinflammatory cytokines interleukin-1alpha (IL-1alpha), IL-1beta, tumor necrosis factor-alpha (TNF-alpha), IL-6, and interferon-gamma (IFN-gamma), as well as the IL-1 receptor antagonist (IL-1ra). Primary cultures of microglia from rat neonatal cerebral cortex were incubated with freshly dissolved Abeta1-40 or Abeta1-42, Abeta1-40 fibrils, Abeta1-40 betaamy balls, or vehicle. Abeta1-40 fibrils did not significantly stimulate any of these cytokines. Freshly dissolved Abeta1-40 resulted in a marked increase in the release of IL-1beta, and freshly dissolved Abeta1-42 significantly stimulated both IL-1alpha and IFN-gamma secretion. The Abeta1-40 betaamy balls stimulated the secretion of IL-1alpha and IL-1beta. Incubation with Abeta peptides did not affect the secretion of IL-1ra, IL-6, or TNF-alpha. In the case of IL-1beta, the response is correlated with the presence of Abeta peptide as monomers and oligomers.

Soluble interleukin-1 receptor type II, IL-18 and caspase-1 in mild cognitive impairment and severe Alzheimer's disease.

In the present study, we have determined levels of soluble interleukin-1 (IL-1) receptor type II (sIL-1RII), interleukin-18 (IL-18) and caspase-1 in cerebrospinal fluid and serum from mild cognitive impairment patients that later progressed to Alzheimer's disease (AD) and severe AD patients. Previous studies have shown that a chronic local inflammatory process is a part of AD neuropathology. In this process, activated microglial production of IL-1 seems to play an important role. In a previous study, we have shown increased levels of sIL-1RII in CSF from AD patients in a mild-moderate disease stage. In the present study, we found no significant differences in CSF or serum levels of sIL-1RII in either mild cognitive impairment or advanced AD patients as compared to control subjects. Likewise, there was no significant difference between mild cognitive impairment and severe AD patients. The same was true for caspase-1 and IL-18 serum levels, whereas CSF levels of caspase-1 and IL-18 were below detection limits. Our data indicate that the IL-1 system is relatively intact in the early and late stages of AD.

Neuronal expression of caspase-1 immunoreactivity in the rat central nervous system.

Caspase-1/interleukin-1beta (IL-1beta)-converting enzyme (ICE) cleaves IL-1beta and IL-18 precursor proteins to the active forms of these proinflammatory cytokines. Since both cytokines are constitutively expressed in the brain, we investigated whether this is also the case for caspase-1. Using an antibody raised against the p10-subunit of the active enzyme, constitutive expression of caspase-1 immunoreactivity was found in nerve cells in the arcuate nucleus and in nerve fibres throughout the brain. Co-localisation with alpha-melanocyte stimulating hormone was demonstrated. The distribution pattern of caspase-1 immunoreactive structures is consistent with a role to produce mature IL-1beta in regions where IL-1beta mediates fever and sleep.