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BACKGROUND: Transitioning to end-of-life care and thereby changing the focus of treatment directives from life-sustaining treatment to comfort care is important for neurological patients in advanced stages. Late transition to end-of-life care for neurological patients has been described previously. OBJECTIVE: To investigate whether previous treatment directives, primary medical diagnoses, and demographic factors predict the transition to end-of-life care and time to eventual death in patients with neurological diseases in an acute hospital setting. METHOD: All consecutive health records of patients diagnosed with stroke, amyotrophic lateral sclerosis (ALS), and Parkinson's disease or other extrapyramidal diseases (PDoed), who died in an acute neurological ward between January 2011 and August 2020 were retrieved retrospectively. Descriptive statistics and multivariate Cox regression were used to examine the timing of treatment directives and death in relation to medical diagnosis, age, gender, and marital status. RESULTS: A total of 271 records were involved in the analysis. Patients in all diagnostic categories had a treatment directive for end-of-life care, with patients with haemorrhagic stroke having the highest (92%) and patients with PDoed the lowest (73%) proportion. Cox regression identified that the likelihood of end-of-life care decision-making was related to advancing age (HR = 1.02, 95% CI: 1.007-1.039, P = 0.005), ischaemic stroke (HR = 1.64, 95% CI: 1.034-2.618, P = 0.036) and haemorrhagic stroke (HR = 2.04, 95% CI: 1.219-3.423, P = 0.007) diagnoses. End-of-life care decision occurred from four to twenty-two days after hospital admission. The time from end-of-life care decision to death was a median of two days. Treatment directives, demographic factors, and diagnostic categories did not increase the likelihood of death following an end-of-life care decision. CONCLUSIONS: Results show not only that neurological patients transit late to end-of-life care but that the timeframe of the decision differs between patients with acute neurological diseases and those with progressive neurological diseases, highlighting the particular significance of the short timeframe of patients with the progressive neurological diseases ALS and PDoed. Different trajectories of patients with neurological diseases at end-of-life should be further explored and clinical guidelines expanded to embrace the high diversity in neurological patients.
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Enfermedades del Sistema Nervioso , Cuidado Terminal , Humanos , Masculino , Cuidado Terminal/métodos , Cuidado Terminal/estadística & datos numéricos , Femenino , Anciano , Persona de Mediana Edad , Estudios Retrospectivos , Enfermedades del Sistema Nervioso/terapia , Enfermedades del Sistema Nervioso/diagnóstico , Enfermedades del Sistema Nervioso/epidemiología , Anciano de 80 o más Años , Esclerosis Amiotrófica Lateral/terapia , Esclerosis Amiotrófica Lateral/diagnóstico , Esclerosis Amiotrófica Lateral/mortalidadRESUMEN
BACKGROUND: Doctor of Philosophy (PhD)-prepared nurses are expected to exercise leadership in their various roles. Therefore, European nurse scholars developed a cross-national web-based Nursing Leadership and Mentoring Educational (Nurse-Lead) program. PURPOSE: To evaluate changes in leadership practices, professional and research competencies as well as career development of PhD-prepared nurses and doctoral nursing students after participation in the Nurse-Lead program. METHODS: A pre-post-test evaluation was conducted. Surveys addressed leadership, professional and research competencies, and career development. Quantitative data were analyzed with descriptive statistics and paired sample t-tests. Content analysis was used for qualitative data. DISCUSSION: The 30 participants showed significant improvements in all leadership practices, professional competencies, and most research competencies. Participants reported increased confidence in decision-making, taking on new responsibilities, and becoming more visible within research teams. CONCLUSION: Web-based, international leadership and mentoring programs are promising tools for the leadership and professional development of PhD-prepared nurses and doctoral nursing students.
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Educación de Postgrado en Enfermería , Tutoría , Estudiantes de Enfermería , Humanos , Liderazgo , InternetRESUMEN
AIM: The increase in the number of people with chronic obstructive pulmonary disease (COPD) and the disease burden, has prompted concerted efforts to improve healthcare, particularly outpatient services. In line with these attempts the Partnership-Based Nursing Practice Theoretical Framework for People with COPD was developed to guide outpatient nursing care. The principal approach of the framework is a 'Dialogue' with the patients, which has four components: 'Establishing family involvement', 'Assisting living with symptoms' and 'Facilitating access to healthcare', with the primary goal being 'Enhancement of the health experience'. With new knowledge, research on the framework, and extensive experience in using it, a need arose to modify the framework to maximize its clinical utility. DESIGN: Discursive paper. METHODS: A narrative review and critical reflection was conducted to revise the nursing practice framework via selected literature search from 2012 to 2022, research on the framework, and the authors' reflections on the clinical experience of using the framework. RESULTS: The nursing practice framework highlights capacities and possibilities that lie in the nurse-patient relationship. The overarching dialogue in the revised framework includes both patients and families. The action-related component 'Assisting living with the disease' was added to the framework to underscore the significance of attempting to understand what may lie ahead for patients and families. The other action-related components are as follows: 'Assisting living with symptoms' and 'Facilitating access to healthcare'. The primary goal remains unchanged: enhancing the 'Health experience'. CONCLUSION: Using the revised nursing practice framework in outpatient care may help to enhance the lives of people with COPD and their families, particularly at advanced stages of the disease. It may have transferability to other groups of people living with progressive diseases dealing with complicated health problems, and to reduce the usage of costly healthcare resources such as hospital care. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The partnership-based nursing practice framework assumes an extension of conventional specialized respiratory service and embraces a comprehensive account for that which may influence the patient's health problems. This guidance, which holistically attends to patient-family needs of living with complicated and progressive health predicaments, is fundamental. It contributes to strengthening the disciplinary focus of nursing, interdisciplinary collaboration, person-family-centred quality nursing care and inspires research initiatives. Critical reflections and updates on nursing practice frameworks, such as this revision, are essential to advance nursing and healthcare. PATIENT OR PUBLIC CONTRIBUTION: There is no direct patient- or public contribution.
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Enfermedad Pulmonar Obstructiva Crónica , Humanos , Atención Ambulatoria , Relaciones Enfermero-PacienteRESUMEN
OBJECTIVE: To assess sense of security, health literacy, and the association between sense of security and health literacy during COVID-19 self-isolation. METHODS: In this cross-sectional survey all adults who caught COVID-19 from the onset of the pandemic until June 2020 in Iceland and received surveillance from a special COVID-19 outpatient clinic, were eligible. Participants retrospectively answered the Sense of Security in Care - Patients' Evaluation and the European Health Literacy Survey Questionnaire. Data were analysed with parametric and non-parametric tests. RESULTS: Participants' (N = 937, 57% female, median age 49 (IQR=23)) sense of security during isolation was Med 5.5 (IQR=1) and 90% had sufficient health literacy. The proposed regression model (R2 =.132) indicated that those with sufficient health literacy had, on average, higher sense of security than those with inadequate health literacy. CONCLUSION: Sense of security was high among individuals who received surveillance from an outpatient clinic during isolation and was associated with health literacy. The high health literacy rate may be an indication of a high COVID-19 specific health literacy rather than general health literacy. PRACTICE IMPLICATIONS: Healthcare professionals can improve the sense of security of patients through measures to improve their health literacy, including their navigation health literacy, by practising good communication, and providing effective patient education.
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COVID-19 , Alfabetización en Salud , Adulto , Humanos , Femenino , Persona de Mediana Edad , Masculino , COVID-19/epidemiología , Estudios Transversales , Estudios Retrospectivos , Encuestas y CuestionariosRESUMEN
AIM: Develop and test a data collection tool-Neurological End-Of-Life Care Assessment Tool (NEOLCAT)-for extracting data from patient health records (PHRs) on end-of-life care of neurological patients in an acute hospital ward. DESIGN: Instrument development and inter-rater reliability (IRR) assessment. METHOD: NEOLCAT was constructed from patient care items obtained from clinical guidelines and literature on end-of-life care. Expert clinicians reviewed the items. Using percentage agreement and Fleiss' kappa we calculated IRR on 32 nominal items, out of 76 items. RESULTS: IRR of NEOLCAT showed 89% (range 83%-95%) overall categorical percentage agreement. The Fleiss' kappa categorical coefficient was 0.84 (range 0.71-0.91). There was fair or moderate agreement on six items, and moderate or almost perfect agreement on 26 items. CONCLUSION: The NEOLCAT shows promising psychometric properties for studying clinical components of care of neurological patients at the end-of-life on an acute hospital ward but could be further developed in future studies.
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Cuidado Terminal , Humanos , Reproducibilidad de los Resultados , Variaciones Dependientes del Observador , Recolección de Datos , HospitalesRESUMEN
BACKGROUND: Twins and late preterm (LPT) infants are at an increased risk of being breastfed to a lesser extent than term singletons. This study aimed to describe the initiation and duration of any and exclusive breastfeeding at the breast for mothers of LPT twins and term twins during the first 4 months and to explore the breastfeeding experiences of mothers of LPT twins. METHODS: A sequential two-sample quantitative-qualitative explanatory mixed-methods design was used. The quantitative data were derived from a longitudinal cohort study in which 22 mothers of LPT twins and 41 mothers of term twins answered questionnaires at one and four months after birth (2015-2017). The qualitative data were obtained from semi-structured interviews with 14 mothers of LPT twins (2020-2021), based on results from the quantitative study and literature. Analysis included descriptive statistics of quantitative data and deductive content analysis of the qualitative data, followed by condensation and synthesis. RESULTS: All mothers of LPT twins (100%) and most mothers of term twins (96%) initiated breastfeeding. There was no difference in any breastfeeding during the first week at home (98% versus 95%) and at 1 month (88% versus 85%). However, at 4 months, the difference was significant (44% versus 75%). The qualitative data highlighted that mothers of LPT twins experienced breastfeeding as complex and strenuous. Key factors influencing mothers' experiences and decisions were their infants' immature breastfeeding behaviors requiring them to express breast milk alongside breastfeeding, the burden of following task-oriented feeding regimes, and the lack of guidance from healthcare professionals. As a result, mothers started to question the worth of their breastfeeding efforts, leading to changes in breastfeeding management with diverse results. Support from fathers and grandparents positively influenced sustained breastfeeding. CONCLUSIONS: Mothers of LPT twins want to breastfeed, but they face many challenges in breastfeeding during the first month, leading to more LPT twins' mothers than term twins' mothers ceasing breastfeeding during the following months. To promote and safeguard breastfeeding in this vulnerable group, care must be differentiated from routine term infant services, and healthcare professionals need to receive proper education and training.
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Lactancia Materna , Nacimiento Prematuro , Femenino , Humanos , Lactante , Recién Nacido , Estudios Longitudinales , Leche Humana , Madres/educaciónRESUMEN
BACKGROUND: Our study aimed to map functioning and contextual factors among community-dwelling stroke survivors after first stroke, based on the International Classification of Functioning, Disability and Health (ICF), and to explore if these factors differ among older-old (75 years and older), younger-old (65-74 years), and young (18-65 years) stroke survivors. METHODS: A cross-sectional population-based national survey among community-dwelling stroke survivors, 1-2 years after their first stroke. Potential participants were approached through hospital registries. The survey had 56.2% response rate. Participants (N = 114, 50% men), 27 to 94 years old (71.6±12.9 years), were categorized as: older-old (n = 51), younger-old (n = 34) and young (n = 29). They answered questions on health, functioning and contextual factors, the Stroke Impact Scale (SIS) and the Behavioural Regulation Exercise Questionnaire-2. Descriptive analysis was used, along with analysis of variance for continuous data and Fisher´s exact tests for categorical variables. TukeyHSD, was used for comparing possible age-group pairings. RESULTS: The responses reflected ICF´s personal and environmental factors as well as body function, activities, and participation. Comparisons between age-groups revealed that the oldest participants reported more anxiety and depression and used more walking devices and fewer smart devices than individuals in both the younger-old and young groups. In the SIS, the oldest participants had lower scores than both younger groups in the domains of activities of daily living and mobility. CONCLUSION: These findings provide important information on needs and opportunities in community-based rehabilitation for first-time stroke survivors and reveal that this population has good access to smart devices which can be used in community integration. Moreover, our results support the need for analysis in subgroups of age among the heterogenous group of older individuals in this population.
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Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular , Actividades Cotidianas , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Evaluación de la Discapacidad , Femenino , Humanos , Vida Independiente , Masculino , Persona de Mediana Edad , Rehabilitación de Accidente Cerebrovascular/métodos , SobrevivientesRESUMEN
AIM: To describe nursing surveillance of coronavirus disease 2019 (COVID-19)-infected patients through remote telephone calls and in an on-site urgent clinic during the first wave of the pandemic as experienced by nurses providing the care. DESIGN: Qualitative descriptive study. METHODS: Data were collected through seven semi-structured, audio-recorded, focus group interviews with 24 nurses. Interviews were conducted in May and June 2020, transcribed and analysed using deductive and inductive content analysis into an overarching category, main categories and subcategories. Reporting followed the COREQ guidelines. RESULTS: Nurses relied on intensive listening when assessing and caring for COVID-19-infected patients. They realized that the patients had complex needs for nursing and healthcare which was beyond the scope of a tentatively prescribed assessment scheme. They designed their care to ensure holistic care, reflected in the overarching category, 'Confronting an unfamiliar health condition in unprecedented circumstances' and the categories: 'Digging into the unknown' and 'Ensuring holistic nursing care'. The category 'Contributing to averting catastrophe' reflects the wealth of knowledge, support and experience that the nurses used to independently deliver care, albeit in interdisciplinary collaboration, working to their greatest potential. They were proud of the significance of their work. CONCLUSION: Novel nursing surveillance through remote telephone calls and in an on-site urgent care clinic delivered to COVID-19 patients self-managing at home resulted in holistic nursing care during the first wave of the pandemic. This has relevance for professionalism in nursing. IMPACT: Findings give a unique insight into nursing surveillance of COVID-19-infected patients provided through telephone calls and in on-site urgent care clinics. The potential of intensive listening as conducted in the study suggests that it may be feasible to assess and holistically take care of COVID-19-infected patients, and other patient groups as well, with this form of healthcare. This has relevance for healthcare beyond crisis management during pandemics. PATIENT OR PUBLIC CONTRIBUTION: There was no patient or public contribution as the study only concerned the providers of the service, i.e. the nurses themselves.
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COVID-19 , Instituciones de Atención Ambulatoria , COVID-19/epidemiología , Humanos , Pandemias , Investigación Cualitativa , TeléfonoRESUMEN
We used explorative interviews to gauge (inter)personal, physiological, and emotional challenges of seven rural cancer patients who traveled long distances to cancer treatment centers. After a thematic analysis, we foregrounded experiences of temporality by using a phenomenologically inspired approach. The analysis resulted in three themes: (a) An epiphany of "what really matters in life"-time gains new meaning, (b) Feeling out of sync with others and own body-striving for coherence and simultaneity, and (c) Being torn between benefits of home and treatments site-time and distance as a tangible aspect of traveling and being away. Under these themes, 13 meaning units were generated, which reflected changes in temporality. During treatment, life primarily revolved around repeating circles of travel arrangements, staying on top of treatment schedule, and synchronizing a home life with a life away from home. Nurses should provide comprehensive care to enhance stability in cancer patients' temporal experiences.
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AIM: To provide insight into the contribution of nursing to the establishment and running of a hospital-based outpatient clinic for COVID-19 infected patients, and thereby to inform the development of similar nursing care and healthcare more generally. DESIGN: Qualitative descriptive study centred on collaboration between nurse managers and researchers. METHODS: Drawing on Donabedian's model of quality health services and the work of Allen on "Nurses' organising work", data were collected using four semi-structured, audio-recorded, focus group interviews with five nurse managers. The interviews were conducted in May and June 2020, transcribed, and subsequently analysed using deductive and inductive content analysis into an overarching category, main categories, and sub-categories. RESULTS: "There was no panic - challenged by the unprecedented" was a strong thread, which was reflected in two categories: (a) Everyone walked in step, containing the sub-categories: Public officials set the tone, Creating order in disorder, and Mutual respect and teamwork, and (b) Inspired by extraordinary accomplishments, encompassing the sub-categories: Realising one's potential and Unexpectedly rewarding. In exceptional circumstances the nurse managers' decision-making authority grew, material and manpower resources were sufficient, promptly constructed work procedures were in place, and tasks were completed instantly in trusting and respectful interdisciplinary collaboration. With sound support and trust from hospital directors, the nurse managers utilised their expertise to the fullest and they were proud of their work. CONCLUSION: The findings portray the almost invisible work of nurse managers in organising complex care. Although the circumstances were exceptional the findings speak to the accomplishments that can be gained when nurse managers have autonomy and the opportunity to utilise their professional capacity to the fullest. IMPACT: The findings reveal the almost invisible work of nurses in organising complex care and can inform the establishment of outpatient clinics for patients infected with COVID-19 and of healthcare development more generally.
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COVID-19 , Enfermeras Administradoras , Instituciones de Atención Ambulatoria , Humanos , Liderazgo , Investigación CualitativaRESUMEN
OBJECTIVE: Previous research suggests that agreement, between youths and their parents, regarding assessment of youth psychiatric problems is limited. Due to this discrepancy, a multi-informant, multimethod approach is recommended when gathering psychopathological information. This study examines parent-youth agreement regarding youth psychiatric problems. It does so at a diagnostic level and at a symptom level, as well as studying the influence of age, gender, depressive disorder, anxiety disorder and attention-deficit/hyperactivity disorder (ADHD) as potential moderators of agreement. METHODS: The participants in this study were 61 adolescents aged 12-18 years and their parents. The K-SADS-PL DSM-5 was administered in two outpatient units, with adolescents and their parents interviewed separately. Participants also rated symptoms using a broad rating scale (Child Behavior Checklist and the Youth Self-Report) prior to being interviewed. RESULTS: Parent-youth agreement at a diagnostic level ranged from fair to excellent. Agreement at a symptom level was lower than that at a diagnostic level, ranging from poor to fair. These results indicate that parent-youth agreement regarding diagnosis and symptoms is higher than in most previous studies. The results also suggest that some variables, such as age, gender, depressive disorders, and ADHD, potentially influence agreement on symptoms. CONCLUSION: These findings support the importance of gathering information from both children and parents, and that clinicians should consider moderating factors when integrating data from multiple informants.
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Trastorno por Déficit de Atención con Hiperactividad , Pacientes Ambulatorios , Adolescente , Adulto , Trastorno por Déficit de Atención con Hiperactividad/diagnóstico , Trastorno por Déficit de Atención con Hiperactividad/epidemiología , Niño , Femenino , Humanos , Masculino , Padres , Escalas de Valoración Psiquiátrica , Reproducibilidad de los ResultadosRESUMEN
AIM: This study aimed to explore how stroke survivors deal with stroke-related impairments when rebuilding their lives in the community and their experiences of exercising at home. DESIGN: An explorative and descriptive qualitative study. METHODS: A purposive sample of ten stroke survivors residing at home was recruited to explore experiences of rebuilding their lives in the community and exercising at home. One focus group interview was conducted followed by semi-structured interviews. Data were analysed using thematic analysis. RESULTS: Three main themes were identified: "Framing exercise within the context of everyday life" describes how stroke survivors integrate exercise in everyday activities with varying success and the social importance of exercising; "Managing the challenges of physical impairment" describes the taxing undertakings in daily living, loss of concentration and identity; "Long-term challenges of everyday life" describes how the stroke survivors manage depression and live with a sense of uncertainty.
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Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular , Grupos Focales , Humanos , Investigación Cualitativa , Accidente Cerebrovascular/terapia , SobrevivientesRESUMEN
PURPOSE: To explore facilitating and inhibiting factors in the inpatient care of patients with functional neurological disorders as experienced by interdisciplinary teams of healthcare professionals. METHOD: Qualitative focus group interviews were conducted with 18 healthcare professionals of various professions. Data were analyzed using qualitative content analysis with inductive coding of data. RESULTS: Two main categories were formulated: (a) Giving the diagnosis to patients - a moment of fragility and opportunities, and (b) Organization of care - ensuring the continuity and protecting patients' self-image. One overarching theme tied the two categories together: Establishing coherence in the inpatient trajectory - moving from stigmatization toward competent care. Coherence and steadiness in care was a prerequisite for transparency in goalsetting and for designating the responsibilities of individual healthcare professionals. Stigma and having clinical experience and knowledge of functional neurological disorders, as two counter-factors, influenced the extent to which this was achieved. Examples of facilitating factors for enhancing competent care were documentation of symptoms, effective ways of passing on clinical information, education, professional dialog, and organizational support. DISCUSSION: To nurture competent care, guidelines, structured educational initiatives and other supportive actions should be promoted. We provide ideas for the next logical steps for clinical practice and research.IMPLICATIONS FOR REHABILITATIONClose collaboration between interdisciplinary healthcare professionals plays an important role for reaching optimal results in the rehabilitation of inpatients with functional neurological disorder.There is currently limited knowledge regarding the facilitating and inhibiting features encountered by interdisciplinary healthcare professionals in the provision of care for patients with a functional neurological disorder.The findings show that a working environment that endorses a skillful culture of practice and which facilitates actions to reduce problems that hamper effective teamwork needs to be promoted.Solutions that help to solve many obstacles encountered by the team of healthcare professionals in the care provision of patients with functional neurological disorders include open dialog regarding symptoms, diagnosis and treatment, effective ways of documenting and reporting symptoms, and availability of guidelines and supporting educational material.
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Enfermedades del Sistema Nervioso , Estereotipo , Actitud del Personal de Salud , Grupos Focales , Personal de Salud , Humanos , Investigación CualitativaRESUMEN
AIM: Little attention has been paid to breastfeeding late preterm (LPT) infants. This study compared breastfeeding, worries, depression and stress in mothers of LPT and term-born infants throughout the first year. We also described factors associated with shorter breastfeeding duration of LPT infants. METHODS: This longitudinal cohort study of the mothers of singleton infants-129 born LPT and 277 born at term-was conducted at Landspitali-The National University Hospital of Iceland, which has the country's only neonatal intensive care unit. The mothers answered questionnaires when their infants were 1, 4, 8 and 12 months of age. RESULTS: Mothers breastfed LPT infants for a significantly shorter time than term infants: a median of 7 months (95% confidence interval 5.53-8.48) vs 9 months (95% confidence interval 8.39-9.61) (P < .05). Starting solids at up to 4 months was the strongest risk factor for LPT breastfeeding cessation during the first year, after adjusting for confounders (P < .001). Their mothers reported more worries about their infants' health and behaviour during the first year and were more likely to experience depression at 4 months. CONCLUSION: Mothers with LPT infants are vulnerable and need greater practical breastfeeding and emotional support in hospital and at home.
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Lactancia Materna , Recien Nacido Prematuro , Femenino , Humanos , Islandia , Lactante , Recién Nacido , Estudios Longitudinales , MadresRESUMEN
BACKGROUND: Elucidating factors that influence physical recovery of survivors after an intensive care unit (ICU) stay is paramount in maximizing long-term functional outcomes. We examined potential predictors for poor long-term physical recovery in ICU survivors. METHODS: Based on secondary analysis of a trial of 50 ICU patients who underwent mobilization in the ICU and were followed for one year, linear regression analysis examined the associations of exposure variables (baseline characteristics, severity of illness variables, ICU-related variables, and lengths of ICU and hospital stay), with physical recovery variables (muscle strength, exercise capacity, and self-reported physical function), measured one year after ICU discharge. RESULTS: When the data were adjusted for age, female gender was associated with reduced muscle strength (P = .003), exercise capacity (P < .0001), and self-reported physical function (P = .01). Older age, when adjusted for gender, was associated with reduced exercise capacity (P < .001). After adjusting for gender and age, an association was observed between a lower score on one or two physical recovery variables and exposure variables, specifically, high body mass index, low functional independence, comorbidity and low self-reported physical function at baseline, muscle weakness at ICU discharge, and longer hospital stay. No adjustment was made for cumulative type I error rate due to small number of participants. CONCLUSION: Elucidating risk factors for poor long-term physical recovery after ICU stay, including gender, may be critical if mobilization and exercise are to be prescribed expediently during and after ICU stay, to ensure maximal long-term recovery.
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Cuidados Críticos , Unidades de Cuidados Intensivos , Anciano , Enfermedad Crítica , Femenino , Humanos , Tiempo de Internación , Masculino , Debilidad Muscular/etiología , SobrevivientesRESUMEN
BACKGROUND: Technical applications can promote home-based exercise and physical activity of community-dwelling stroke survivors. Caregivers are often able and willing to assist with home-based exercise and physical activity but lack the knowledge and resources to do so. ActivABLES was established to promote home-based exercise and physical activity among community-dwelling stroke survivors, with support from their caregivers. The aim of our study is to investigate the feasibility of ActivABLES in terms of acceptability, demand, implementation and practicality. METHODS: A convergent design of mixed methods research in which quantitative results were combined with personal experiences of a four-week use of ActivABLES by community-dwelling stroke survivors with support from their caregivers. Data collection before, during and after the four-week period included the Berg Balance Scale (BBS), Activities-Specific Balance Confidence Scale (ABC), Timed-Up-and-Go (TUG) and Five Times Sit to Stand Test (5xSST) and data from motion detectors. Semi-structured interviews were conducted with stroke survivors and caregivers after the four-week period. Descriptive statistics were used for quantitative data. Qualitative data was analysed with direct content analysis. Themes were identified related to the domains of feasibility: acceptability, demand, implementation and practicality. Data was integrated by examining any (dis)congruence in the quantitative and qualitative findings. RESULTS: Ten stroke survivors aged 55-79 years participated with their informal caregivers. Functional improvements were shown in BBS (+ 2.5), ABC (+ 0.9), TUG (- 4.2) and 5xSST (- 2.7). More physical activity was detected with motion detectors (stand up/sit down + 2, number of steps + 227, standing + 0.3 h, hours sitting/lying - 0.3 h). The qualitative interviews identified themes for each feasibility domain: (i) acceptability: appreciation, functional improvements, self-initiated activities and expressed potential for future stroke survivors; (2) demand: reported use, interest in further use and need for follow-up; (3) implementation: importance of feedback, variety of exercises and progression of exercises and (4) practicality: need for support and technical problems. The quantitative and qualitative findings converged well with each other and supported the feasibility of ActivABLES. CONCLUSIONS: ActivABLES is feasible and can be a good asset for stroke survivors with slight or moderate disability to use in their homes. Further studies are needed with larger samples.
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Cuidadores/psicología , Terapia por Ejercicio/organización & administración , Servicios de Atención de Salud a Domicilio/organización & administración , Rehabilitación de Accidente Cerebrovascular/métodos , Sobrevivientes/psicología , Anciano , Personas con Discapacidad , Estudios de Factibilidad , Femenino , Humanos , Vida Independiente , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Apoyo Social , Sobrevivientes/estadística & datos numéricosRESUMEN
BACKGROUND: Novel technical solutions are called for to promote home-based exercise among community-dwelling stroke survivors supported by their caregivers. Lack of resources and knowledge about how to accomplish it, has been demonstrated. The objective of this study is to describe in detail the development of ActivABLES, a technical intervention to promote home-based exercise and physical activity engagement of community-dwelling stroke survivors with support from their caregivers. METHODS: The technical development process of ActivABLES was guided by the Medical Research Council (MRC) framework for development and evaluation of complex interventions as well as by principles of human-centred design and co-design. The main steps included: (1) Synthesis of evidence supporting the inclusion of balance exercises, mobility and walking exercises and exercises for the upper arm; (2) Implementation of initial user studies with qualitative data collection from individual interviews with stroke survivors, and focus group interviews with caregivers and health professionals; (3) Preliminary testing of eight prototypes with seven stroke survivors and their caregivers. RESULTS: After the preliminary testing of eight prototypes, four prototypes were not further developed whereas four prototypes were modified further. In addition, two new prototypes were developed, leaving six prototypes for further modification: 1) ActivFOAM for balance exercises, 2) WalkingSTARR to facilitate walking, 3) ActivBALL for hand exercises, 4) ActivSTICKS for upper arm exercises, and 5) ActivLAMP and 6) ActivTREE which both give visual feedback on progress of daily exercise and physical activities. ActivFOAM, ActivBALL and ActivSTICKS are all connected to a tablet where exercise instructions are given. All the exercise prototypes can be connected to ActivLAMP and ActivTREE to give feedback on how much exercise the user has done. Settings can be individualised and recommended daily time and/or repetition can easily be changed as the user progresses to higher activity levels. CONCLUSIONS: The development process of ActivABLES was guided by the principles of human-centred design, with iterative testing of future users, and by the MRC framework of complex intervention, with a repeated process of development and testing. This process resulted in six prototypes which are available for feasibility testing among a small group of community-dwelling stroke survivors.
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Terapia por Ejercicio/métodos , Servicios de Atención de Salud a Domicilio/organización & administración , Rehabilitación de Accidente Cerebrovascular/métodos , Sobrevivientes/psicología , Cuidadores/psicología , Grupos Focales , Investigación sobre Servicios de Salud/organización & administración , Humanos , Vida Independiente , Apoyo SocialRESUMEN
The objective of this workshop was to determine current nursing research priorities in critical care, adult pulmonary, and sleep conditions through input from consumer (patient, family, and formal and informal caregivers) and nursing experts around the world. Working groups composed of nurses and patients selected potential research priorities based on patient insight and a literature review of patient-reported outcomes, patient-reported experiences, and processes and clinical outcomes in the focal areas. A Delphi consensus approach, using a qualitative survey method to elicit expert opinion from nurses and consumers was conducted. Two rounds of online surveys available in English, Spanish, and Chinese were completed. A 75% or greater threshold for endorsement (combined responses from nursing and consumer participants) was determined a priori to retain survey items. A total of 837 participants (649 nurses and 188 patients, family, and/or caregivers) from 45 countries responded. Survey data were analyzed and nursing research priorities that comprise 23 critical care, 45 adult pulmonary, and 16 sleep items were identified. This project was successful in engaging a wide variety of nursing and consumer experts, applying a patient-reported outcome/patient-reported experience framework for organizing and understanding research priorities. The project outcome was a research agenda to inform, guide, and aid nurse scientists, educators, and providers, and to advise agencies that provide research and program funding in these fields.
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Cuidadores/psicología , Investigación en Enfermería Clínica/organización & administración , Enfermeras y Enfermeros/psicología , Pacientes/psicología , Adulto , Consenso , Cuidados Críticos , Técnica Delphi , Femenino , Política de Salud , Prioridades en Salud , Humanos , Internacionalidad , Masculino , Persona de Mediana Edad , Enfermeras y Enfermeros/organización & administración , Neumología , Sueño , Encuestas y CuestionariosRESUMEN
This study aimed to describe and compare breastfeeding progression, infants' feeding behaviours, maternal feeding difficulties, and mothers' usage of breastfeeding interventions for singleton late preterm (LPT) and term infants. A further aim was to identify associated factors for exclusive breastfeeding at breast at 1 month in LPT infants. This was a cohort study where mothers of LPT infants from a neonatal unit (n = 60), LPT infants from a maternity unit (n = 62), and term infants from a maternity unit (n = 269) answered a questionnaire approximately 1 month after delivery. Findings showed no significant differences in exclusive breastfeeding at breasts between LPT infants admitted to the neonatal unit compared with the maternity unit, during the first week at home (38% vs. 48%), or at 1 month of age (52% vs. 50%). Term infants were more likely to be exclusively breastfed at the breast (86% and 74%, p < 0.05) compared with LPT infants. Multiple regression analysis showed that usage of a nipple shield, not feeding breast milk exclusively during the first week at home, or feeding less than 10 times per day at 1 month were statistically significant for not exclusively breastfeed at the breast. A protective factor was the mothers' experience of having an abundance of milk during the first week at home. In conclusion, LPT infants are less likely to be exclusively breastfed at the breast than term infants, highlighting the need for further research to guide interventions aimed at optimising exclusive breastfeeding rates.
Asunto(s)
Lactancia Materna/estadística & datos numéricos , Nacimiento Prematuro , Nacimiento a Término , Adulto , Estudios de Cohortes , Femenino , Maternidades , Humanos , Islandia/epidemiología , Recién Nacido , Unidades de Cuidado Intensivo Neonatal , Encuestas y CuestionariosRESUMEN
BACKGROUND: Advance care planning (ACP) is well recognised as an important component of palliative care. However, there is still a need to explore ways in which it can become a part of routine practice, ensuring a timely and person-centred discussion. OBJECTIVES: To explore patients newly diagnosed with advanced lung cancer and their family members' experiences of engaging in a person-centred and structured ACP discussion facilitated by palliative care nurses in an outpatient oncology clinic at the University Hospital of Iceland. METHODS: An exploratory qualitative design employing semi-structured interviews and thematic analysis. The intervention included a structured ACP discussion, aided by a booklet. RESULTS: Key themes emerged describing families' and patients' experiences and highlighted that the timing and approach of the ACP discussion was appropriate and helpful, even though the discussion was sensitive and difficult. Using a routine approach with a flexible structure normalised the discussion and made it easier for the patients to take the lead in the discussion. CONCLUSIONS: ACP discussion can be part of an integrated palliative care and oncology service if implemented in a systematic way.