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BACKGROUND: Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. METHODS: Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. RESULTS: Three themes were generated from the data: "Visibility and relatability"; "Embedding opportunities for engagement into everyday life"; "Societal and cultural barriers to open discussion". Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. CONCLUSIONS: Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.
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Planificación Anticipada de Atención , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Grupos de Población , Estigma Social , Salud Pública , Investigación CualitativaRESUMEN
BACKGROUND: Children with intellectual disability are less physically active and more sedentary than typically developing peers. To date no studies have tested the feasibility of a school-based walking intervention for children with Intellectual Disability. METHOD: A clustered randomised controlled trial (cRCT), with an embedded process evaluation, was used to test the feasibility of a school-based walking intervention. Eight schools (n = 161 pupils aged 9-13 years) were randomised into either an intervention arm or an 'exercise as usual' arm. Measures included physical activity, physical fitness and emotional wellbeing. Baseline and 3-month follow-up data were collected. RESULTS: The 'Walk Buds' intervention was found to be acceptable to teaching staff and pupils, with an uptake rate of the walking sessions offered of 84%. CONCLUSION: A number of challenges were experienced, relating to the COVID-19 pandemic, and difficulties collecting accelerometer data. Barriers, facilitators and required changes identified through the mixed methods process evaluation are discussed.
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Ejercicio Físico , Estudios de Factibilidad , Discapacidad Intelectual , Aptitud Física , Caminata , Humanos , Niño , Discapacidad Intelectual/rehabilitación , Adolescente , Masculino , Femenino , Caminata/fisiología , Aptitud Física/fisiología , COVID-19 , Servicios de Salud Escolar , Salud MentalRESUMEN
BACKGROUND: Effective health care relies on person-centeredness and teamwork, which are known to improve outcomes. These two concepts have been defined individually, but we could not find a definition of the combined concept. A preliminary definition was developed through a concept analysis; however, consensus on the concept has not been reached. AIM: The aim of this study was to reach consensus on the definition and attributes of person-centered teamwork. METHODS: A consensus design allowed experts to collaborate and share their experience and wisdom to refine and reach consensus on the definition and attributes of person-centered teamwork. An e-Delphi was used to engage the experts. RESULTS: Three rounds of online engagement with 12 experts were needed to reach consensus on the definition and attributes of person-centered teamwork. The attributes reached consensus of 82% after the first round. The definition had 82% consensus after the three rounds. The definition had been adjusted and refined according to the expert input. The newly adjusted definition was established. LINKING EVIDENCE TO ACTION: We successfully used the e-Delphi method to obtain consensus on the attributes and definition of person-centered teamwork. The definition of person-centered teamwork can be further developed and included in clinical practice to guide improved clinical outcomes. The consensus definition of person-centered teamwork provides a clear understanding of the meaning thereof, which may in turn enrich the usability thereof in clinical practice. Person-centered teams improve outcomes for persons receiving care in hospitals. Building person-centered teams are now better understood and the foundation of building these teams defined. We engaged with 12 experts in the academic and clinical field of person-centeredness and teamwork. The use and value of the Delphi method to obtain consensus is now better understood and can assist future research development.
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Consenso , Técnica Delphi , Atención Dirigida al Paciente , Humanos , Atención Dirigida al Paciente/normas , Grupo de Atención al Paciente/normas , Encuestas y CuestionariosRESUMEN
BACKGROUND: Secondary prevention is a priority after coronary revascularization for effective long-term cardiovascular care. Coronary Heart Disease is a major health problem in Jordan, but little is known about the current provision of secondary prevention. AIM: The aim of this study was to evaluate risk factors and explore the current provision of secondary Coronary Heart Disease prevention among patients presenting with first-time Coronary Heart Disease at two time points: during hospitalization (Time 1) and 6 months later (Time 2), in multicentre settings in Jordan. METHODS: A descriptive, repeated measures research study design was applied to a consecutive sample of 180 patients with first-time Coronary Heart Disease. Demographic and clinical details were recorded from medical files. Self-administered questionnaires developed by the researchers were used to measure secondary prevention information related to Coronary Heart Disease, including secondary prevention services, lifestyle advice received and medical advice topics. A short form of the International Physical Activity Questionnaire was used to measure physical activity. Participants were assessed at Times 1 and 2. RESULTS: Unstructured lifestyle advice given to the patients at Times 1 and 2 most frequently related to medications, smoking, diet and blood lipids control advice topics, with no statistically significant improvement in cardiovascular risk factors among patients between Times 1 and 2. CONCLUSION: Despite an extremely high prevalence of risk factors in this population, the provision of secondary prevention is poor in Jordan, which requires urgent improvement, and the contribution of nurses' to secondary prevention should be enhanced.
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Enfermedad Coronaria , Estilo de Vida , Humanos , Prevención Secundaria , Factores de Riesgo , Enfermedad Coronaria/complicaciones , Enfermedad Coronaria/prevención & control , Hospitales PúblicosRESUMEN
BACKGROUND: Cardiac Cachexia is a wasting syndrome that has a significant impact on patient mortality and quality of life world-wide, although it is poorly understood in clinical practice. AIM: Identify the prevalence of cardiac cachexia in patients with advanced New York Heart Association (NYHA) functional class and explore its impact on patients and caregivers. DESIGN: An exploratory cross-sectional study. The sequential approach had two phases, with phase 1 including 200 patients with NYHA III-IV heart failure assessed for characteristics of cardiac cachexia. Phase 2 focussed on semi-structured interviews with eight cachectic patients and five caregivers to ascertain the impact of the syndrome. SETTING/PARTICIPANTS: Two healthcare trusts within the United Kingdom. RESULTS: Cardiac Cachexia was identified in 30 out of 200 participants, giving a prevalence rate of 15%. People with cachexia had a significantly reduced average weight and anthropometric measures (p < 0.05). Furthermore, individuals with cachexia experienced significantly more fatigue, had greater issues with diet and appetite, reduced physical wellbeing and overall reduced quality of life. C-reactive protein was significantly increased, whilst albumin and red blood cell count were significantly decreased in the cachectic group (p < 0.05). From qualitative data, four key themes were identified: (1) 'Changed relationship with food and eating', (2) 'Not me in the mirror', (3) 'Lack of understanding regarding cachexia' and (4) 'Uncertainty regarding the future'. CONCLUSIONS: Cardiac cachexia has a debilitating effect on patients and caregivers. Future work should focus on establishing a specific definition and clinical pathway to enhance patient and caregiver support.
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Caquexia , Insuficiencia Cardíaca , Caquexia/epidemiología , Caquexia/etiología , Cuidadores , Estudios Transversales , Insuficiencia Cardíaca/complicaciones , Humanos , Prevalencia , Calidad de VidaRESUMEN
BACKGROUND: Globally COVID-19 has had a profound impact on the provision of healthcare, including palliative care. However, there is little evidence about the impact of COVID-19 on delivery of out-of-hours specialist palliative care services in the United Kingdom. The aim of the study is to investigate the impact of the COVID-19 pandemic on the delivery of out-of-hours community-based palliative care services. METHODS: A national online census survey of managers of adult hospices in the United Kingdom was undertaken. Survey were emailed to managers of adult hospices (n = 150) who provided out-of-hours community palliative care services. Fifteen questions related specifically to the impact of COVID-19. Quantitative data were analysed using descriptive statistics and qualitative data were analysed using descriptive content analysis. RESULTS: Eighty-one responses to the survey were returned (54% response rate); 59 were complete of which 47 contained COVID-19 data. Findings indicated that COVID-19 impacted on out-of-hours community-based palliative care. To meet increased patient need, hospices reconfigured services; redeployed staff; and introduced new policies and procedures to minimize virus transmission. Lack of integration between charitably and state funded palliative care providers was reported. The interconnected issues of the use and availability of Personal Protective Equipment (n = 21) and infection control screening (n = 12) resulted in changes in nursing practices due to fear of contagion for patients, carers and staff. CONCLUSIONS: Survey findings suggest that due to increased demand for community palliative care services, hospices had to rapidly adapt and reconfigure services. Even though this response to the pandemic led to some service improvements, in the main, out-of-hours service reconfiguration resulted in challenges for hospices, including workforce issues, and availability of resources such as Personal Protective Equipment. These challenges were exacerbated by lack of integration with wider healthcare services. More research is required to fully understand the implications of such changes on the quality of care provided.
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Atención Posterior , COVID-19 , Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Adulto , COVID-19/epidemiología , Humanos , PandemiasRESUMEN
BACKGROUND: Internationally, participation in advance care planning is low. Whilst a community action approach is advocated, what the public know and understand about advance care planning is unknown. AIM: To assess public awareness, knowledge and attitudes towards advance care planning and identify strategies to raise awareness within a public health framework. DESIGN: Sequential mixed methods comprising a cross-sectional survey and focus group/interviews. SETTING/PARTICIPANTS: A random representative sample of adults from one region of the United Kingdom (n = 1201; response rate 56%) completed a face-to-face survey. Twenty-five participants consented to an additional focus group/interview held in a secure accessible location or via telephone. RESULTS: Most participants (78.7%) acknowledged the benefits of advance care planning conversations, however, two thirds did not want to think about advance care planning or find out more at present. Respondents were reluctant to broach advance care planning as it was linked to end of life care and funeral plans, and they did not wish to cause distress to their loved one. Respondents trusted their family to respect their wishes and they considered having an advance care plan in place would be of assistance in the future. Top-down leadership, normalisation, and increased education were identified as potential approaches to overcome barriers. CONCLUSIONS: Advance care planning was recognised as important despite limited awareness, lack of knowledge and misperceptions. Whilst a community action approach to enhance understanding and engagement was supported, a 'one size fits all' approach will not work; rather bespoke targeting is required with educational and media messaging aligned.
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Planificación Anticipada de Atención , Adulto , Actitud , Estudios Transversales , Humanos , Supersticiones , Reino UnidoRESUMEN
BACKGROUND: Moving palliative care from a solely clinical focus to a more population based and community orientated approach is the hallmark of a much advocated public health approach to palliative care. Young adults are a vital cohort of the public, yet their understanding of palliative care has not been investigated. This study aimed to explore young adults' understanding of palliative care and identify factors that influence their engagement. METHODS: A purposive sample of young adults (n = 24) aged 18-29 years were recruited from one UK University. Semi-structured interviews were undertaken face to face or via telephone or Skype between November 2017 and February 2018. Thematic analysis using a framework approach and underpinned by a socioecological perspective was used to analyse the interviews. RESULTS: Three thematic categories were identified relating to intrapersonal and interpersonal influences, cultural and social influences and organisational and public policy influences. Palliative care was understood as supportive comfort care, delivered in the absence of cure, associated with the end of life and specifically focused on death and dying. Negative attitudes related to the context of care, which represented a static and hopeless situation. Whilst some reported positive attitudes, potential engagement was seen to be governed by a lack of knowledge and protective cultural norms. In terms of demonstrating readiness to engage with palliative care, participants requested clear information and suggested a normalising of palliative care through the education system. CONCLUSION: Young adults in this study were ready to find out more about palliative care and identified social media as a platform upon which to engage this population. However, their perception of a society that views palliative care as a subject for those directly affected, creates a barrier to engagement. This study identified the ingredients of a public health message and mediums for disseminating the message. However, findings also suggest that a cultural shift is required to recognise the potential of engaging young adults in health issues that cross the life span, empowering them not only as individuals but as vital members of community and society.
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Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Humanos , Grupos de Población , Salud Pública , Investigación Cualitativa , Adulto JovenRESUMEN
BACKGROUND: Palliative care is recognised as a public health issue with the need for earlier integration in the wider healthcare system. However, research indicates that it continues to be accessed late in the course of an illness, public understanding of palliative care is limited, and common misconceptions prevail. Strategies to address this are needed in order to reduce barriers to palliative care delivery and improve access. METHODS: An explanatory sequential mixed methods study, comprising a cross-sectional survey and interviews was undertaken. Sociodemographic characteristics, public awareness, knowledge and perceptions of palliative care were examined and strategies to raise awareness and overcome barriers within a public health framework were identified. Survey data were analysed using SPSS v25 with factor analysis and non-parametric statistics and qualitative data were analysed using thematic analysis. RESULTS: A total of 1201 participants completed the survey (58.3% female, mean age 61 years) and 25 took part in interviews. A fifth of participants (20.1%) had previously heard about palliative care and had an accurate understanding of the term. Being female, higher educated, married, and older, increased respondents' levels of awareness. The three most commonly held misconceptions included: Palliative care is exclusively for people who are in the last 6 months of life (55.4% answered incorrectly); A goal of palliative care is to address any psychological issues brought up by serious illness (42.2% answered incorrectly); and a goal of palliative care is to improve a person's ability to participate in daily activities (39.6% answered incorrectly). Talking about palliative and end of life care was advocated but societal taboos restricted this occurring with exposure limited to personal experience. CONCLUSIONS: Current knowledge gaps and misconceptions derived from limited ad hoc personal experiences and fear of engaging in taboo conversations may deter people from accessing integrated palliative care services early in a disease trajectory. The results indicate the need for public education programmes that move beyond merely raising awareness but provide key messages within a public health approach, which may change attitudes to palliative care thus ultimately improving end of life outcomes.
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Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Estudios Transversales , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , PercepciónRESUMEN
BACKGROUND: It is important to have a full and detailed understanding of the factors that influence intention to leave nursing. It has been shown to be the best predictor of actual turnover, and turnover has a significant financial impact and also on the provision of care. AIMS: The aim is to examine the impact of predictive work environment factors on nurses' intention to leave their position and to explore contributing factors. METHODS: Cross-sectional survey using a convenience sample (n = 605) of Finnish nurses drawn from five clinical settings. The Nursing Context Index, an internationally used and psychometrically validated tool, was used to measure workplace practice environment, work stress, job satisfaction and intention to leave. A response rate of 29.4% was achieved, exceeding power calculation estimates. RESULTS: Personal satisfaction and satisfaction with profession and resources, and organisational commitment were significantly related to intention to leave. Younger nurses reported higher levels of intention to leave and there was variability among clinical specialties. Measures of stress and practice environment had no significant relationship with intention to leave. DISCUSSION: This study provides a new theoretical model for understanding intention to leave. Having a better understanding of the factors that may help reduce intention to leave allows for targeted interventions to be developed and implemented. This would help reduce the personal and financial implications associated with turnover. IMPLICATIONS FOR PRACTICE, POLICY, MANAGEMENT AND EDUCATION: The findings have significant implications for all aspects of nursing. Educators need to prepare new nursing staff for the working environment; policymakers must ensure that nursing satisfaction is promoted to strengthen organisational commitment and nurse managers and leaders respond accordingly in implementing effective interventions.
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Intención , Personal de Enfermería en Hospital , Estudios Transversales , Humanos , Satisfacción en el Trabajo , Reorganización del Personal , Encuestas y Cuestionarios , Lugar de TrabajoRESUMEN
BACKGROUND: Most people spend their last year of life at home, with many wishing to die there, but patients may need access to care after hours. Out-of-hours palliative care is delivered by multi-disciplinary teams including Health Care Assistants (HCA). However, little is known about the role, contribution and impact Health Care Assistants have on out-of-hours palliative care services. The aim of this study is to examine the Health Care Assistant role, contribution and impact on service delivery and patient care in out-of-hours community palliative care provided by hospice organisations. METHODS AND ANALYSIS: A mixed methods exploratory study consisting of four phases. Phase one involves a scoping review to systematically map and identify gaps in policy and literature on the HCA role in out-of-hours palliative care. In phase two, all United Kingdom hospices will be invited to participate in an online census to enable the development of a typology of out-of-hours services and the contribution of the Health Care Assistant. During phase three organisational case studies representing different service types will collect information from Health Care Assistants, patients, caregivers and service managers to gather qualitative and quantitative data about out-of-hours service provision and the Health Care Assistant role. Finally, phase four will synthesize and refine results through online focus groups. ETHICS AND DISSEMINATION: Ethical approval has been obtained for phase two through Ulster University Research Governance Filter Committee, Nursing and Health Research. Findings will be disseminated through practitioner and/or research journals, conferences, and social media.
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BACKGROUND: The United States has yet to ratify the UN Convention on the Rights of Persons with Disabilities. The extent of public support in the United States for the rights of persons with intellectual disability is not known. METHODS: Online public opinion polls were conducted nationally and in eight selected cities in 2017 and repeated in 2018 with 26,876 respondents in total. RESULTS: Support for rights was high: notably in accessing healthcare, schooling, playing sports and getting married. However, less support was evident for the rights of people who were perceived as less capable. Respondents with prior frequent personal contact and who had an engagement with Special Olympics were those most likely to support the rights and capabilities of persons with intellectual disability. CONCLUSIONS: Public support for the ratification of the UN Convention seems likely. Further longitudinal research could identify successful strategies for implementing the rights of disabled persons locally and nationally.
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Personas con Discapacidad , Discapacidad Intelectual , Derechos Humanos , Humanos , Percepción , Naciones Unidas , Estados UnidosRESUMEN
The complexity and costs associated with traditional randomized, controlled trials have increased exponentially over time, and now threaten to stifle the development of new drugs and devices. Nevertheless, the growing use of electronic health records, mobile applications, and wearable devices offers significant promise for transforming clinical trials, making them more pragmatic and efficient. However, many challenges must be overcome before these innovations can be implemented routinely in randomized, controlled trial operations. In October of 2018, a diverse stakeholder group convened in Washington, DC, to examine how electronic health record, mobile, and wearable technologies could be applied to clinical trials. The group specifically examined how these technologies might streamline the execution of clinical trial components, delineated innovative trial designs facilitated by technological developments, identified barriers to implementation, and determined the optimal frameworks needed for regulatory oversight. The group concluded that the application of novel technologies to clinical trials provided enormous potential, yet these changes needed to be iterative and facilitated by continuous learning and pilot studies.
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Ensayos Clínicos como Asunto , Registros Electrónicos de Salud , Aplicaciones Móviles , Dispositivos Electrónicos Vestibles , Humanos , Proyectos de InvestigaciónRESUMEN
BACKGROUND: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. AIM: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. DESIGN: Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. SETTING/PARTICIPANTS: Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. RESULTS: Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. CONCLUSION: Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this.
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Cuidadores , Laxativos , Anciano , Estreñimiento/terapia , Atención a la Salud , Humanos , Laxativos/uso terapéutico , Cuidados Paliativos , Investigación Cualitativa , Reino UnidoRESUMEN
BACKGROUND: Access to community palliative care 'out-of-hours' - defined as care provided after the normal hours of work - is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution. AIM: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care. DESIGN: Scoping review. DATA SOURCES: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement. RESULTS: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient's and family's physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home. DISCUSSION: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers.
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Atención Posterior , Enfermería de Cuidados Paliativos al Final de la Vida , Técnicos Medios en Salud , Cuidadores , Humanos , Cuidados PaliativosRESUMEN
AIM: The aim of this study is to cross-culturally translate and adapt the Cardiac Self-Efficacy Questionnaire into Arabic and subsequently evaluate the psychometric properties of that translation in a population of Arabic patients. METHOD: The original English version of the Cardiac Self-Efficacy Questionnaire was translated into Arabic following a process recommended by the World Health Organization. A convenience sample consisting of 268 Jordanian patients with coronary heart disease was recruited from a university-affiliated hospital in Amman, Jordan. Data were collected from October 2018 to March 2019. The factor structure, face and content validities, and internal consistency of the Arabic Cardiac Self-Efficacy Questionnaire (A-CSEQ) were evaluated. RESULTS: The factor structure analysis supported a three-factor high-order structure of the A-CSEQ. Face validity showed that the language used, style, and format were clear. The content validity demonstrated a very good content validity index. The reliability was good with ranging from 0.89 to 0.93 for all questionnaire subscales. CONCLUSION: The A-CSEQ is a valid and reliable instrument to assess the cardiac self-efficacy of Arabic patients diagnosed with coronary heart disease. Further assessment of the psychometric properties of the A-CSEQ with different cardiac problems is now recommended.
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Enfermedad Coronaria/fisiopatología , Comparación Transcultural , Autoeficacia , Encuestas y Cuestionarios , Análisis Factorial , Femenino , Humanos , Jordania , Lenguaje , Masculino , Persona de Mediana Edad , Psicometría , Reproducibilidad de los Resultados , Traducción , TraduccionesRESUMEN
BACKGROUND: Cachexia is a complex and multifactorial syndrome defined as severe weight loss and muscle wasting which frequently goes unrecognised in clinical practice [1]. It is a debilitating syndrome, resulting in patients experiencing decreased quality of life and an increased risk of premature death; with cancer cachexia alone resulting in 2 million deaths per annum [2]. Most work in this field has focused on cancer cachexia, with cardiac cachexia being relatively understudied - despite its potential prevalence and impact in patients who have advanced heart failure. We report here the protocol for an exploratory study which will: 1. focus on determining the prevalence and clinical implications of cardiac cachexia within advanced heart failure patients; and 2. explore the experience of cachexia from patients' and caregivers' perspectives. METHODS: A mixed methods cross-sectional study. Phase 1: A purposive sample of 362 patients with moderate to severe heart failure from two Trusts within the United Kingdom will be assessed for known characteristics of cachexia (loss of weight, loss of muscle, muscle mass/strength, anorexia, fatigue and selected biomarkers), through basic measurements (i.e. mid-upper arm circumference) and use of three validated questionnaires; focusing on fatigue, quality of life and appetite. Phase 2: Qualitative semi-structured interviews with patients (n = 12) that meet criteria for cachexia, and their caregivers (n = 12), will explore their experience of this syndrome and its impact on daily life. Interviews will be digitally recorded and transcribed verbatim, prior to qualitative thematic and content analysis. Phase 3: Workshops with key stakeholders (patients, caregivers, healthcare professionals and policy makers) will be used to discuss study findings and identify practice implications to be tested in further research. DISCUSSION: Data collected as part of this study will allow the prevalence of cardiac cachexia in a group of patients with moderate to severe heart failure to be determined. It will also provide a unique insight into the implications and personal experience of cardiac cachexia for both patients and carers. It is hoped that robust quantitative data and rich qualitative perspectives will promote crucial clinical discussions on implications for practice, including targeted interventions to improve patients' quality of life where appropriate.
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Caquexia/psicología , Corazón/fisiopatología , Prevalencia , Caquexia/epidemiología , Protocolos Clínicos , Estudios Transversales , Corazón/crecimiento & desarrollo , Humanos , Entrevistas como Asunto/métodos , Investigación Cualitativa , Calidad de Vida/psicología , Reino Unido/epidemiologíaRESUMEN
BACKGROUND: Constipation is a common symptom for patients receiving palliative care. Whilst international clinical guidelines are available on the clinical management of constipation for people with advanced cancer receiving specialist palliative care (SPC), the extent to which the guidelines are implemented in practice is unclear. This study aimed to examine clinical practices for the assessment and management of constipation for patients with advanced cancer within inpatient SPC settings. METHODS: A multi-site retrospective case-note review was conducted, consisting of 150 patient case-notes from three inpatient SPC units across the United Kingdom between August 2016 and May 2017. The variables selected for review were determined by the recommendations within the clinical guidelines. Descriptive statistics, cross tabulation, chi square, and bivariate correlations were used to examine clinical practices compared to policy guidelines for the assessment and management of constipation. Reporting was structured by the STROBE checklist for observational research (Additional File 2). RESULTS: A comprehensive assessment, including a full history and performing a physical exam, was recorded for 109 patients (73%), however, no standardised documentation was utilised. Assessment was nurse led, with variable involvement across sites of other members of the multidisciplinary team (MDT). Education on prevention was documented in 30 (20%) case-notes, and 53% recorded evidence of non-pharmacological intervention. Age, gender, and reason for admission did not impact on the likelihood of receiving a comprehensive assessment, education, or non-pharmacological intervention, however, significant differences were evident between sites. Pharmacological management was well developed and aligned to the guidelines however, 33% of patient case-notes recorded no information on the titration of laxatives. Twelve percent of patients experienced partial or complete bowel obstruction, and management strategies were variable. CONCLUSIONS: Constipation management is driven by a pharmacological approach, with little evidence of the implementation of preventative and non-pharmacological strategies. The nurse plays a key coordinating role in assessment; however, involvement and roles of the wider MDT varies. Accurate recording of care is essential when examining clinical practice and identifying areas for improvement. Further education is needed to equip HCPs with the knowledge and skills to ensure consistency in assessment and implementation of appropriate non-pharmacological/ preventative strategies.
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Estreñimiento/etiología , Neoplasias/complicaciones , Cuidados Paliativos/métodos , Examen Físico/normas , Anciano , Anciano de 80 o más Años , Estreñimiento/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/psicología , Examen Físico/métodos , Examen Físico/tendencias , Estudios Retrospectivos , Reino UnidoRESUMEN
BACKGROUND: Healthcare contexts are rapidly changing, with growing demand for health services to accommodate an aging population and financial pressures. Assessment of context in healthcare settings has been the subject of increasing debate. The Context Assessment Index (CAI) examines three interconnected contextual elements derived from the Promoting Action on Research Implementation in Health Services (PARIHS) framework to provide practitioners with an understanding of the context in which they work. AIMS: (a) To describe the translation of the CAI into Danish and adapt the instrument for use in Danish hospitals and (b) to evaluate the psychometric properties of the Danish version of the CAI. METHODS: Translation and adaptation included an expert panel and a translation and back-translation process. The CAI was then sent to 4,416 nurses in the Region Zealand, Denmark. There are two alternative measurement models to explain the factor structure of the CAI, the five-factor model and the three-factor model. To provide the best explanation for the data, both measurement models were examined using confirmatory factor analysis. RESULTS: The CAI was translated and modified based on expert review and usability testing. Completing the CAI were 2,261 nurses. For both models, factor loadings and fit statistics were acceptable, appropriate, and statistically significant, and the measurement models were confirmed (five-factor model: root mean square error of approximation [RMSEA] 0.07, comparative fit index [CFI] = 0.923; three-factor model: RMSEA 0.07, CFI = 0.924). Cronbach's alpha scores showed the models to have broadly acceptable scores (five-factor model 0.64-0.89; three-factor model 0.72-0.89). LINKING EVIDENCE TO ACTION: The three-factor model can advantageously be used when the PARIHS framework is part of the project. In a translation process, differences in cultural specificity, language, and working environment have to be considered. By understanding the context of practice, nurses may enable person-centered care and improve patient outcomes.
Asunto(s)
Psicometría/normas , Adulto , Anciano , Dinamarca , Práctica Clínica Basada en la Evidencia/métodos , Femenino , Humanos , Masculino , Persona de Mediana Edad , Psicometría/instrumentación , Psicometría/métodos , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , TraducciónRESUMEN
BACKGROUND: Constipation is an important issue for patients receiving palliative care within specialist palliative care settings. Questions and ambiguity, however, persist about international best practice and management. AIM: To synthesise the current evidence base on the assessment and management of constipation for palliative care patients within a specialist palliative care setting. DESIGN: This is a systematic review. DATA SOURCES: MEDLINE, Embase, CINAHL, Scopus and Cochrane databases were systematically searched in April 2017 for empirical studies, written in English, on the assessment and management of constipation in specialist palliative care settings, published between 2007 and 2017. Two researchers independently reviewed and critically appraised all studies, conducted data extraction, and undertook a thematic analysis. RESULTS: In total, 13 studies were included in the review comprising randomised trials ( n = 3), observational ( n = 4) and descriptive studies ( n = 6). Most research was conducted in specialist palliative care units, targeting either healthcare professionals or patients. The analysis highlighted a lack of standard definition of constipation, raising questions on the existence and comparability of baseline prevalence figures, the physical and psychological impact on patients, resource impact on staff and service, the subjective and objective methods of assessing constipation, and key aspects of constipation management, including a lack of focus on non-pharmacological management in this setting. CONCLUSION: The results of this review are being used to inform the development of an educational intervention targeting healthcare professionals. Gaps in the evidence base include lack of consistent definition of constipation, constipation prevention, non-pharmacological management, and the consideration of the management of constipation for the dying patient.