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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
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
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: 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
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: 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: 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
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
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.
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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
AIMS: The aim of this study was to describe a structured 3-month nurse-led follow-up of patients after discharge from intensive care and measure its effects on health status. BACKGROUND: Patients requiring intensive care stay frequently have lengthy and incomplete recovery suggesting need for additional support. The effects of intensive care nurse-led follow-up have not been sufficiently elucidated. DESIGN: A prospective, quasi-experimental study of patients who received structured nurse-led follow-up from intensive care nurses after discharge from intensive care until 3 months afterwards. The control group received usual care. METHODS: Of 574 patients assessed for eligibility, from November 2012 - May 2015, 168 were assigned to the experimental group (N = 73) and the control group (N = 75). Primary outcome was health status, measured with eight scales of Short Form-36v2, before the intensive care admission and at four time points until 12 months after intensive care. A mixed effect model tested differences between the groups over time. Criteria for Reporting Development and Evaluation of Complex Interventions 2 guideline, guided the reporting of the intervention. RESULTS: The structured nurse-led follow-up did not improve patients' health status compared with usual care (mixed effect model, p = .078-.937). CONCLUSION: The structured nurse-led follow-up did not reveal an effect on the intensive care patients studied. Further examination of intensive care nurse-led follow-up is needed, taking into account the heterogeneity of the patient population, variations in length of ward stay, patients' health care needs during the first week at home after discharge from general ward and health status before intensive care admission.
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Cuidados Posteriores , Unidades de Cuidados Intensivos , Personal de Enfermería en Hospital , Alta del Paciente , Adulto , Anciano , Enfermería de Cuidados Críticos , Estudios de Factibilidad , Femenino , Estudios de Seguimiento , Estado de Salud , Humanos , Tiempo de Internación , Masculino , Persona de Mediana Edad , Relaciones Enfermero-Paciente , Proyectos Piloto , Estudios ProspectivosRESUMEN
AIM: To describe the characteristics of couple-based intervention studies that address sexuality following cancer. BACKGROUND: Sexuality-related problems are common among cancer survivors and their partners. DESIGN: Systematic literature review with a narrative summary of results. DATA SOURCES: Electronic searches were conducted in PubMed, CINAHL and PsychINFO. We included studies published from 1 January 2009 - 31 December 2016. Additional information was retrieved by scrutinizing reference lists, conducting citation tracking and contacting authors. We included all types of quantitative intervention studies published in the English language which contained outcome measures corresponding to the neo-theoretical framework of sexuality-sexual function, sexual relationship and sexual self-concept. REVIEW METHODS: Our review was guided by the Joanna Briggs Institute reviewer's manual. Data were extracted and appraised using the standardized checklists for quantitative studies. This assessment was conducted independently by two reviewers. A third reviewer was involved if consensus could not be reached. RESULTS: Fourteen studies were included. Interventions were delivered face-to-face, by telephone or via the Internet. Sessions ranged from 1-8, with a duration from 2-22 weeks. Most studies offered ≥3 sessions. Interventions addressed unique concerns and/or provided general education. There was little agreement on the use of outcome measures. Most studies inadequately described fidelity to the study protocol and the training of interventionists. CONCLUSION: There was no clear consensus about how couple-based interventions are best structured. The results provide tentative evidence for how the quality of future research studies can be improved and how knowledge can be used in clinical practice.
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Supervivientes de Cáncer/psicología , Conducta Sexual/psicología , Minorías Sexuales y de Género/psicología , Sexualidad/psicología , Esposos/psicología , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Adulto JovenRESUMEN
AIMS AND OBJECTIVES: To gain insight into the lived experience of learning about having chronic obstructive pulmonary disease for patients and their families. BACKGROUND: Chronic obstructive pulmonary disease often progresses for years. Adjustment to declining health is gradual, and the disease may have developed considerably when health care is sought and people are diagnosed. Reaching patients at early stages is necessary to delay progression of the disease. DESIGN: Interpretive phenomenology. METHODS: Data were collected in four family focus group interviews (N = 37) and a subsample of eight family-dyad interviews. Patients were eight men, and 14 women aged 51-68 years. Majority of the patients (n = 19) were at GOLD grades II and III, with three at grade IV. The family members were eight men, and seven women aged 29-73 years. Data were collected between June-November 2012. RESULTS: Five, not mutually exclusive themes, revealed a long and arduous process of learning about and becoming diagnosed with chronic obstructive pulmonary disease and how unaware participants were of the imminent threat that the disease imposes on life. The themes were as follows: burden of shame and self-blame, enclosed in addiction, living in parallel worlds, realising the existence of the disease and a cry for empathy. CONCLUSIONS: Learning about and realising the existence of chronic obstructive pulmonary disease and what it entails at present time and in the future was bleak for the participants. The patients tended to put aside the thought of being a person with chronic obstructive pulmonary disease and defer actions that might halter progression of the disease, particularly to quit smoking. RELEVANCE TO CLINICAL PRACTICE: Individuals and families need support early in the disease process to realise and accept the existence of chronic obstructive pulmonary disease and particularly to deal with the challenges that nicotine addiction, shame and self-blame present. Increased public awareness about this enormous, but hidden, health problem is necessary.
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Progresión de la Enfermedad , Familia/psicología , Enfermedad Pulmonar Obstructiva Crónica/psicología , Adulto , Anciano , Femenino , Grupos Focales , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Persona de Mediana Edad , Enfermedad Pulmonar Obstructiva Crónica/clasificación , Enfermedad Pulmonar Obstructiva Crónica/terapia , Investigación Cualitativa , Cese del Hábito de Fumar/psicologíaRESUMEN
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.
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Planificación Anticipada de Atención , Neoplasias Pulmonares/enfermería , Grupo de Atención al Paciente , Anciano , Anciano de 80 o más Años , Femenino , Enfermería de Cuidados Paliativos al Final de la Vida , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Proyectos PilotoRESUMEN
Recruitment, the process of accessing, screening, selecting and retaining participants for research remains a challenge. In a randomized controlled trial, partnership-based self-management intervention for patients who have chronic obstructive pulmonary disease (COPD) in its initial stages, and their families, a theoretical framework developed for patients with an advanced COPD and their families was modified and implemented in a primary care context. In contrast to recruitment to the original study where 4% decline participation, in this study 25% of the potential patients declined participation. Although participants were encouraged to bring a family member, only 25% of them did so. The main reason for not being accompanied by a family member was that patients did not want anybody accompany them. Those who had quit smoking were more often accompanied by a family member compared to those who smoked. Reviewing the literature, the most compelling explanations for non-participation are shame and self-blame due to smoking, and that potential participants may not have envisioned any benefits from participating since they might not have realized that they had COPD. An alternative recruitment process needs to embrace the situation that potential participants find themselves in and which takes account of the issues at stake.
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Fumar Cigarrillos/psicología , Aceptación de la Atención de Salud/psicología , Selección de Paciente , Enfermedad Pulmonar Obstructiva Crónica/terapia , Tabaquismo/psicología , Anciano , Familia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Enfermedad Pulmonar Obstructiva Crónica/fisiopatología , Ensayos Clínicos Controlados Aleatorios como Asunto , Autocuidado , Autoevaluación (Psicología) , VergüenzaRESUMEN
BACKGROUND: Nurses often have difficulties with using interdisciplinary stroke guidelines for patients with stroke as they do not focus sufficiently on nursing. Therefore, the Stroke Nursing Guideline (SNG) was developed and implemented. The aim of this study was to determine the implementation and feasibility of the SNG in terms of changes in documentation and use of the guideline in the care of stroke patients on Neurological and Rehabilitation wards, barriers and facilitators, and nurses' and auxiliary nurses' view of the implementation. METHODS: A sequential explorative mixed method design was used including pre-test post-test measures and post intervention focus groups interviews. For the quantitative part retrospective electronic record data of nursing care was collected from 78 patients and prospective measures with Barriers and Facilitators Assessment Instrument (BFAI) and Quality Indicator Tool (QIT) from 33 nursing staff including nurses and auxiliary nurses. In the qualitative part focus groups interviews were conducted with nursing staff on usefulness of the SNG and experiences with implementation. RESULTS: Improved nursing documentation was found for 23 items (N = 37), which was significant for nine items focusing mobility (p = 0.002, p = 0.024, p = 0.012), pain (p = 0.012), patient teaching (p = 0.001, p = 0.000) and discharge planning (p = 0.000, p = 0.002, p = 0.004). Improved guideline use was found for 20 QIT-items (N = 30), with significant improvement on six items focusing on mobility (p = 0.023), depression (p = 0.033, p = 0.025, p = 0.046, p = 0.046), discharge planning (p = 0.012). Facilitating characteristics for change were significantly less for two of four BFAI-subscales, namely Innovation (p = 0.019) and Context (p = 0.001), whereas no change was found for Professional and Patient subscales. The findings of the focus group interviews showed the SNG to be useful, improving and providing consistency in care. The implementation process was found to be successful as essential components of nursing rehabilitation were defined and integrated into daily care. CONCLUSION: Nursing staff found the SNG feasible and implementation successful. The SNG improved nursing care, with increased consistency and more rigorous functional exercises than before. The SNG provides nurses and auxiliary nurses with an important means for evidence based care for patients with stroke. Several challenges of implementing this complex nursing intervention surfaced which mandates ongoing attention.
RESUMEN
Pain is a personal experience and patient-provider communication therefore an essential part of diagnosis and treatment where the patient's perspective needs to be central. The aim of this descriptive cross-sectional study was to investigate chronic-pain-related patient-provider communication in the context of sociodemographic variables, pain variables, perceived outcome of care, and satisfaction with health care providers. A postal questionnaire measuring socio-demographic variables, pain characteristics, pain-related health care utilization and patient-provider communication was sent to a sample of 4,500 individuals randomly drawn from the national population of Iceland. A subsample reporting chronic pain and having visited a health care provider for pain the previous six months (n = 401) was analyzed. Relationships between patient-provider communication and other measured variables were tested using bivariate and multivariate statistics. The more chronic pain impaired health-related quality of life, the more provider control the patients perceived in the patient-provider communication. There was also a strong negative relationship between patients' perception of providers' support and openness to discussing symptoms, and satisfaction with health care provider. Patients' perception of their own control in patient-provider communication and involvement in decisions regarding care was related to sociodemographic variables (specifically, education and residence) but not to pain related variables. This study highlights the importance of assessing chronic pain in a broad spectrum, listening, and giving patients time and support to communicate chronic pain and how it affects their life situation. The more interfering the pain is, the more important this is.
Asunto(s)
Dolor Crónico/rehabilitación , Comunicación , Relaciones Enfermero-Paciente , Percepción , Adulto , Anciano , Dolor Crónico/terapia , Estudios Transversales , Femenino , Humanos , Islandia , Masculino , Persona de Mediana Edad , Satisfacción del Paciente , Calidad de Vida/psicología , Factores Socioeconómicos , Encuestas y CuestionariosRESUMEN
AIM AND OBJECTIVES: To analyse and synthesise the structure, content, types of outcome variables and advantages of nurse-led follow-up of adult patients after discharge from intensive care units. BACKGROUND: Follow-up service after discharge from the intensive care unit has been suggested as a way of supporting recovery of patients. Nevertheless, varieties exist in the understanding and content of nurse-led follow-up. DESIGN: An integrative review of nurse-led follow-up inspired by the framework of Whittemore and Knafl. METHODS: An integrative method merged with the recommendations of the PRISMA statement was used to structure the review and findings. Online databases PubMed, CINAHL, ScienceDirect and Scopus were searched from the years 2003-2014. The retrieved articles were independently assessed by two reviewers. Critical appraisal was conducted using check lists from Johanna Briggs Institute. Emerging patterns were validated by all the authors throughout the entire process of analysis. RESULTS: Seventeen papers were included. Three patterns of nurse-led follow-up were identified: (1) Ward visits--in the immediate time after discharge from intensive care unit, (2) Ward visits and appointment(s) to an intensive care unit follow-up clinic and (3) follow-up visit to an intensive care unit and phone call(s) after discharge. Content of short-term nurse-led follow-up (1) ranged from clinical assessment to supporting patients in articulating their subjective health concerns. Long-term nurse-led follow-up (2, 3) included appointments, phone call(s) or information on where advice could be sought. Types of outcome variables were primarily descriptive. There were strong implications for patients' satisfaction with nurse-led follow-up up to six months after discharge. CONCLUSION: Nurse-led follow-up might promote patients' health and enable use of adequate resources. RELEVANCE TO CLINICAL PRACTICE: The findings of this review could be used to design, and test, future interventions and their implementation.
Asunto(s)
Cuidados Posteriores , Unidades de Cuidados Intensivos , Rol de la Enfermera , Alta del Paciente , Adulto , Femenino , Humanos , Masculino , Satisfacción del PacienteRESUMEN
BACKGROUND: Individuals with chronic pain are among the most frequent users of health care. Still, a significant percentage does not utilize health care for pain. A range of factors predict chronic pain-related health care utilization. DESIGN: A cross-sectional study aimed at identifying predictors of chronic pain-related health care utilization and comparing predictors between men and women. METHODS: A postal questionnaire measuring sociodemographic variables, pain characteristics, health-related quality of life (HRQoL) and pain-related health care utilization, was sent to a sample of 4500 individuals randomly drawn from the national population of Iceland. The relationships between sociodemographic and pain-related factors and pain-related health care utilization among participants reporting chronic pain (≥3 months) were tested by using bivariate and multivariate statistical analysis. RESULTS: Among participants reporting chronic pain, 53.2% had consulted a health care provider for pain during the previous 6 months. Predictors for chronic pain-related health care utilization differed between men and women. Interference with life and pain pattern was the strongest predictors among women, as compared with interference with life and the physical components of HRQoL for men. Pain-related health care utilization was not linked to sociodemographic factors. CONCLUSIONS: Pain-related variables are better predictors of chronic pain-related health care utilization than sociodemographic factors. Even though gender does not predict chronic pain-related health care utilization, there are gender differences in the relationships between pain-related variables and health care utilization. Men tend to postpone health care consultations for chronic pain longer than women.