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Objective: Natural language processing (NLP) can enhance research on activities of daily living (ADL) by extracting structured information from unstructured electronic health records (EHRs) notes. This review aims to give insight into the state-of-the-art, usability, and performance of NLP systems to extract information on ADL from EHRs. Materials and Methods: A systematic review was conducted based on searches in Pubmed, Embase, Cinahl, Web of Science, and Scopus. Studies published between 2017 and 2022 were selected based on predefined eligibility criteria. Results: The review identified 22 studies. Most studies (65%) used NLP for classifying unstructured EHR data on 1 or 2 ADL. Deep learning, combined with a ruled-based method or machine learning, was the approach most commonly used. NLP systems varied widely in terms of the pre-processing and algorithms. Common performance evaluation methods were cross-validation and train/test datasets, with F1, precision, and sensitivity as the most frequently reported evaluation metrics. Most studies reported relativity high overall scores on the evaluation metrics. Discussion: NLP systems are valuable for the extraction of unstructured EHR data on ADL. However, comparing the performance of NLP systems is difficult due to the diversity of the studies and challenges related to the dataset, including restricted access to EHR data, inadequate documentation, lack of granularity, and small datasets. Conclusion: This systematic review indicates that NLP is promising for deriving information on ADL from unstructured EHR notes. However, what the best-performing NLP system is, depends on characteristics of the dataset, research question, and type of ADL.
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Introduction: This paper provides insight into the development of the Dutch Dementia Care and Support Registry and the lessons that can be learned from it. The aim of this Registry was to contribute to quality improvement in dementia care and support. Methods: This paper describes how the Registry was set up in four stages, reflecting the four FAIR principles: the selection of data sources (Findability); obtaining access to the selected data sources (Accessibility); data linkage (Interoperability); and the reuse of data (Reusability). Results: The linkage of 16 different data sources, including national routine health and administrative data appeared to be technically and legally feasible. The linked data in the Registry offers rich information about (the use of) care for persons with dementia across various healthcare settings, including but not limited to primary care, secondary care, long-term care and medication use, that cannot be obtained from single data sources. Conclusions: A key lesson learned is that in order to reuse the data for quality improvement in practice, it is essential to involve healthcare professionals in setting up the Registry and to guide them in the interpretation of the data.
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AIM: This study aims firstly to identify shifts in the execution of medical tasks by nurses in the past decade. Secondly, it aims to explore nurses' perspectives on task shifting: how they think task shifting affects the quality of care, the attractiveness of nursing practice and their collaboration with physicians. DESIGN: A quantitative repeated cross-sectional study. METHODS: A nationwide survey was conducted among Dutch registered nurses (RNs) working in hospitals and home care, first in 2012 and again in 2022, with sample sizes of 359 and 362, respectively. Analyses were based on descriptive statistics and logistic and linear regressions. RESULTS: Between 2012 and 2022, there was a significant increase in the execution of only one medical task by nurses, namely prescribing over-the-counter medication. The majority reported in both years that task shifting has positive impact on their professional autonomy and the attractiveness of nursing practice. However, most nurses also reported that task shifting increased their workload (72.7% in 2022) could lead to conflicts in care teams (20.9% in 2022 compared to 14.7% in 2012) and may cause physicians to feel threatened (32.8% in 2022 and 29.9% in 2012). There were no significant changes in nurses' perception of the impact of task shifting on quality of care, the attractiveness of nursing practice and the nurse-physician relationship. CONCLUSION: There was an increase in the execution of prescribing over-the-counter-medication by nurses between 2012 and 2022. However, both in 2012 and in 2022, as the majority of nurses reported that task shifting increased their workload, there is reason to worry about this negative consequence of task shifting, e.g. with regard to labour market issues. Further research, also among the medical profession, is needed to better understand and address the implications of task shifting for the nursing profession. IMPLICATIONS FOR THE PROFESSION: Implications for the nursing profession include potential scope expansion with complex tasks, attracting more individuals to nursing careers, although an eye must also be kept on what that means for the workload of nurses and the relationship with physicians. IMPACT: Nurse prescribing medicines was more executed in 2022 compared to 2012. Nurses had a predominantly positive perspective on task shifting, but still felt it can cause conflicts in care teams, high workload and physicians feeling threatened. These results can help during implementation of task shifting and in monitoring the perceived effects of task shifting among nurses. REPORTING METHOD: This study followed the STROBE reporting guideline for cross-sectional studies. PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution. This study focussed on the task shifting (perspectives) of nurses.
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BACKGROUND: To improve the quality of palliative care, six evidence-based tools were implemented in 10 care services specialised in care for people with intellectual disabilities. Contextual differences were taken into account by using a participatory action research approach. METHOD: The RE-AIM framework (Reach, Effectiveness, Adoption, Implementation and Maintenance) structured the evaluation. Data sources were online questionnaires completed by 299 professionals at baseline (response 45.2%) and 250 professionals after 2.5 years (35.1%), 11 semi-structured group interviews with 43 professionals, field notes and implementation plans. RESULTS: A total of 767 professionals and 43 teams were reached. The effectiveness of the intervention was demonstrated in an improved knowledge of palliative care policy and increased competences among professionals. 79% of the professionals adopted tools in the toolbox. The participatory action research method was perceived as valuable in driving change. CONCLUSIONS: Improving palliative care needs a context-specific, flexible approach, with involvement of all stakeholders.
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Deficiência Intelectual , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Pesquisa sobre Serviços de Saúde , Inquéritos e QuestionáriosRESUMO
PURPOSE: Patients diagnosed with cancer might experience changes in intimacy and sexuality due to the illness itself, treatment, or psychological and social factors. Healthcare professionals (HCPs) often feel reluctant to discuss these changes. This study aimed to provide an overview of the feasibility and effectiveness of communication tools that support communication regarding changes in intimacy or sexuality among patients with cancer. METHODS: This is a systematic review. Databases are PubMed, Embase, CINAHL, PsycInfo, Web of Science and Cochrane Library from inception to June 2023. The Mixed Methods Appraisal Tool was used to assess included studies. Data were summarized in data charting forms. RESULTS: In total 35 studies were included, published between 2001 and 2023. Most had a quantitative design and moderate methodological quality. In 11 studies, the PLISSIT model (Permission, Limited Information, Specific Suggestions, Intensive Therapy) was used. Tools were integrated in counselling sessions or training programmes for individual patients, couples, groups of patients, or HCPs. All tools were considered feasible by patients or HCPs. Twenty studies reported significant improvement in sexual functioning, quality of life, quality of care or combined outcomes. CONCLUSION: Tools to support communication about changes in intimacy and sexuality among patients with cancer seem feasible and effective. The most commonly used tool, the PLISSIT model, proved to be feasible for HCPs and to have a positive effect on patients' and partners' sexual functioning and quality of life. Giving attention to changes in intimacy and sexuality seems to be important in itself, regardless of the communication tool or approach used.
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Neoplasias , Qualidade de Vida , Humanos , Estudos de Viabilidade , Sexualidade , ComunicaçãoRESUMO
BACKGROUND: Nursing competency frameworks describe the competencies; knowledge, skills and attitudes nurses should possess. Countries have their own framework. Knowledge of the content of professional competency frameworks in different countries can enhance the development of these frameworks and international collaborations. OBJECTIVE: This study examines how competencies and task divisions are described in the current professional competency frameworks for registered nurses (RNs with a Bachelor's degree) in the Netherlands, Belgium, the United Kingdom (UK), Canada and the United States (US). METHODS: Qualitative document analysis was conducted using the most recently published professional competency frameworks for registered nurses in the above-mentioned five countries. RESULTS: All the competency frameworks distinguished categories of competencies. Three of the five frameworks explicitly mentioned the basis for the categorization: an adaptation of the CanMEDS model (Netherlands), European directives on the recognition of professional qualifications (Belgium) and an adapted inter-professional framework (US). Although there was variation in how competencies were grouped, we inductively identified ten generic competency domains: (1) Professional Attitude, (2) Clinical Care in Practice, (3) Communication and Collaboration, (4) Health Promotion and Prevention, (5) Organization and Planning of Care, (6) Leadership, (7) Quality and Safety of Care, (8) Training and (continuing) Education, (9) Technology and e-Health, (10) Support of Self-Management and Patient Empowerment. Country differences were found in some more specific competency descriptions. All frameworks described aspects related to the division of tasks between nurses on the one hand and physicians and other healthcare professionals on the other hand. However, these descriptions were rather limited and often imprecise. CONCLUSIONS: Although ten generic domains could be identified when analysing and comparing the competency frameworks, there are country differences in the categorizations and the details of the competencies described in the frameworks. These differences and the limited attention paid to the division of tasks might lead to cross-country differences in nursing practice and barriers to the international labour mobility of Bachelor-educated RNs.
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BACKGROUND: Providing care for ageing and vulnerable people with intellectual disability (ID) is challenging, and professionals working in ID care often have limited experience in palliative care. The current study provides insight into palliative care practices in ID care services and competencies of professionals and identifies ways to improve palliative care for people with ID. METHODS: For this study ten services in the Netherlands were recruited that provide care for people with mild to profound ID. Professionals in each of these services conducted a self-assessment of their palliative care policies and practices based on nine core element of palliative care described in the Dutch Quality Framework for Palliative Care. The self-assessment included a medical file review of a total of 100 people with ID who died non-suddenly. In addition, 424 professionals from the services returned a digital questionnaire on palliative care competencies and training needs. RESULTS: The self-assessments showed that individual care plans were recorded for people with ID and that multidisciplinary teams provided physical, psychological, social and spiritual care. However, other core elements of palliative care, such as cooperation with other organisations and expertise in palliative care, were less present in ID care services. Only half of the services collaborated with regional organisations in palliative care, and most services listed no requirements for the palliative care skills of their professionals. The questionnaire showed that almost 10% of the professionals reported that they were not at all competent in providing palliative care, and 74% felt that they needed training in palliative care. Reported areas for improvement in the provision of palliative care were increasing the quality of palliative care, improving the expertise of professionals and identifying palliative care needs earlier. CONCLUSIONS: To improve palliative care in ID care services changes are required both in competencies of professionals, and organisational policies and practices. Services should enhance awareness about palliative care for people with ID, strengthen collaboration with palliative care services, and offer training or support for professionals in assessing and meeting the needs of people with ID at the end of life.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Deficiência Intelectual , Humanos , Cuidados Paliativos , Autoavaliação (Psicologia) , Deficiência Intelectual/terapia , Políticas , MorteRESUMO
OBJECTIVE: Exploring physicians' views on hospital nurses' role in decision-making about potentially life-prolonging treatments in patients with a short life expectancy. METHODS: A qualitative study using semi-structured interviews with hospital physicians. Data were collected from May to September 2019 and analyzed following principles of thematic analysis. RESULTS: Fifteen physicians working in different hospitals and specialisms participated. Physicians stated that they are responsible for the final decision about potentially life-prolonging treatments. They considered nurses' role in decision-making to be complementary to the roles of both patients and the physicians themselves, especially when there are doubts or complex situations. Physicians varied in how important they found nurses' involvement in the decision-making process: some physicians saw the involvement of nurses as "situation-dependent", while others viewed nurses' involvement as standard practice. Furthermore, physicians mentioned practical obstacles to involving nurses, like the limited time available to both nurses and physicians themselves. CONCLUSION: Physicians recognize a complementary role for nurses in decision-making about potentially life-prolonging treatment, especially in cases with doubts or complex situations. PRACTICE IMPLICATIONS: Physicians and nurses should engage with each other to make nurses' involvement less situation-dependent. This inter-professional collaboration regarding decision-making about life-prolonging treatments should be stimulated, supported and maintained.
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Enfermeiras e Enfermeiros , Médicos , Assistência Terminal , Humanos , Papel do Profissional de Enfermagem , Pesquisa Qualitativa , Expectativa de Vida , Tomada de DecisõesRESUMO
Young adult caregivers experience reduced wellbeing when the combination of family care and an educational program becomes too demanding. We aim to clarify the role views, competences, and needs of lecturers regarding the identification and support of these students to prevent negative mental health consequences. A mixed-methods explanatory sequential design was used. We collected quantitative data using a survey of lecturers teaching in bachelor education programs in the Netherlands (n = 208) and then conducted in-depth interviews (n = 13). Descriptive statistics and deductive thematic analyses were performed. Most participants (70.2%) thought that supporting young adult caregivers was the responsibility of the educational institution, and 49% agreed that it was a responsibility of the lecturer, but only 66.8% indicated that they feel competent to do so. However, 45.2% indicated that they needed more training and expertise to identify and support these students. All interviewees felt responsible for their students' wellbeing but highlighted a lack of clarity regarding their role fulfillment. In practice, their ability to identify and support these students depended on their available time and level of expertise. The lecturers required agreements on responsibility and procedures for further referral, as well as information on support and referral opportunities, communication skills courses, and peer-to-peer coaching.
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Instituições Acadêmicas , Estudantes , Adulto Jovem , Humanos , Cuidadores , Família , Doença CrônicaRESUMO
BACKGROUND: Scientific researchers who wish to reuse health data pertaining to individuals can obtain consent through an opt-in procedure or opt-out procedure. The choice of procedure may have consequences for the consent rate and representativeness of the study sample and the quality of the research, but these consequences are not well known. OBJECTIVE: This review aimed to provide insight into the consequences for the consent rate and consent bias of the study sample of opt-in procedures versus opt-out procedures for the reuse of routinely recorded health data for scientific research purposes. METHODS: A systematic review was performed based on searches in PubMed, Embase, CINAHL, PsycINFO, Web of Science Core Collection, and the Cochrane Library. Two reviewers independently included studies based on predefined eligibility criteria and assessed whether the statistical methods used in the reviewed literature were appropriate for describing the differences between consenters and nonconsenters. Statistical pooling was conducted, and a description of the results was provided. RESULTS: A total of 15 studies were included in this meta-analysis. Of the 15 studies, 13 (87%) implemented an opt-in procedure, 1 (7%) implemented an opt-out procedure, and 1 (7%) implemented both the procedures. The average weighted consent rate was 84% (60,800/72,418 among the studies that used an opt-in procedure and 96.8% (2384/2463) in the single study that used an opt-out procedure. In the single study that described both procedures, the consent rate was 21% in the opt-in group and 95.6% in the opt-out group. Opt-in procedures resulted in more consent bias compared with opt-out procedures. In studies with an opt-in procedure, consenting individuals were more likely to be males, had a higher level of education, higher income, and higher socioeconomic status. CONCLUSIONS: Consent rates are generally lower when using an opt-in procedure compared with using an opt-out procedure. Furthermore, in studies with an opt-in procedure, participants are less representative of the study population. However, both the study populations and the way in which opt-in or opt-out procedures were organized varied widely between the studies, which makes it difficult to draw general conclusions regarding the desired balance between patient control over data and learning from health data. The reuse of routinely recorded health data for scientific research purposes may be hampered by administrative burdens and the risk of bias.
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Renda , Consentimento Livre e Esclarecido , Feminino , Humanos , Masculino , Viés , Escolaridade , PubMedRESUMO
BACKGROUND: In the nursing home sector, reusing routinely recorded data from electronic health records (EHRs) for knowledge development and quality improvement is still in its infancy. Trust in appropriate and responsible reuse is crucial for patients and nursing homes deciding whether to share EHR data for these purposes. A data governance framework determines who may access the data, under what conditions, and for what purposes. This can help obtain that trust. Although increasing attention is being paid to data governance in the health care sector, little guidance is available on development and implementation of a data governance framework in practice. OBJECTIVE: This study aims to describe the development process of a governance framework for the "Registry Learning from Data in Nursing Homes," a national registry for EHR data on care delivered by nursing home physicians (in Dutch: specialist ouderengeneeskunde) in Dutch nursing homes-to allow data reusage for research and quality improvement of care. METHODS: Relevant stakeholders representing practices, policies, and research in the nursing home sector were identified. Semistructured interviews were conducted with 20 people from 14 stakeholder organizations. The main aim of the interviews was to explore stakeholders' perspectives regarding the Registry's aim, data access criteria, and governing bodies' tasks and composition. Interview topics and analyses were guided by 8 principles regarding governance for reusing health data, as described in the literature. Interview results, together with legal advice and consensus discussions by the Registry's consortium partners, were used to shape the rules, regulations, and governing bodies of the governance framework. RESULTS: Stakeholders valued the involvement of nursing home residents and their representatives, nursing home physicians, nursing homes' boards of directors, and scientists and saw this as a prerequisite for a trustworthy data governance framework. For the Registry, involvement of these groups can be achieved through a procedure in which residents can provide their consent or objection to the reuse of the data, transparency about the decisions made, and providing them a position in a governing body. In addition, a data request approval procedure based on predefined assessment criteria indicates that data reuse by third parties aligns with the aims of the Registry, benefits the nursing home sector, and protects the privacy of data subjects. CONCLUSIONS: The stakeholders' views, expertise, and knowledge of other frameworks and relevant legislation serve to inform the application of governance principles to the contexts of both the nursing home sector and the Netherlands. Many different stakeholders were involved in the development of the Registry Learning from Data in Nursing Homes' governance framework and will continue to be involved. Engagement of the full range of stakeholders in an early stage of governance framework development is important to generate trust in appropriate and responsible data reuse.
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Casas de Saúde , Melhoria de Qualidade , Humanos , Organizações , Privacidade , Registros Eletrônicos de SaúdeRESUMO
This study provides insight into circumstances that facilitate or hamper living at home with advanced dementia until the end of life. Interviews were held with 11 bereaved family caregivers, two general practitioners, and nine case managers, related to a total of 12 persons with advanced dementia who had recently died. Persons with dementia who lived at home until the end of life often had family caregivers that received timely support from professionals and their social network. In the cases where the person with dementia could not live at home until the end of life, safety issues, severely challenging behavior, and high care dependency of the person with dementia played key roles. Case management and a continuous process of advance care planning will improve the chance that the end-of-life setting is in accordance with the key values and needs of both the person with dementia and family caregivers.
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Gerentes de Casos , Clínicos Gerais , Assistência Terminal , Humanos , Cuidadores , Estudos Retrospectivos , Pesquisa Qualitativa , MorteRESUMO
Objective(s): To examine the perspectives of staff, and family caregivers (i.e., family, friends, and volunteers) on the impact of the Namaste Care Family program on all involved. The Namaste Care Family program is a structured program for people with advanced dementia based on a palliative care approach in which family caregivers provide daily sessions together with staff with the aim to increase residents' quality of life. Methods: In this descriptive qualitative study, we interviewed 12 family caregivers, and 31 staff members from 10 nursing homes. Data was analyzed thematically. Results: A perceived impact of the program was identified for the residents, staff, and family caregivers. For residents, this included well-being, more engagement, enhanced interactions, changes in energy level, and weight gain. The impact on family caregivers included a more positive view of people with dementia, changes in family visits, mixed feelings during sessions, and mixed changes in relations with all involved. For staff, this included diverse work experiences, shift to more person-centered care (more time and attention for residents, and more awareness), and developing relationships with residents and colleagues. Conclusions: The Namaste Care Family program was valued for its observed benefits and shift towards a person-centered care culture.
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Cuidadores , Demência , Humanos , Qualidade de Vida , Casas de Saúde , Cuidados Paliativos , FamíliaRESUMO
OBJECTIVES: To evaluate the feasibility, facilitators of and barriers to delivering Namaste Care by volunteers and family carers to community-dwelling people with dementia, and to map family carers and volunteers' experiences with the programme. DESIGN: Qualitative interview study with two phases: (1) preparation phase; (2) pilot phase. SETTING: Private residences of community-dwelling people with dementia in the UK and the Netherlands. PARTICIPANTS: Family carers and volunteers of community-dwelling people with dementia (phase 1: 36 Dutch interviews, phase 2: 9 Dutch and 16 UK interviews). INTERVENTION: Namaste Care is a multicomponent psychosocial programme, originally developed for people with dementia residing in long-term care facilities. Meaningful activities were offered by carers and volunteers. Each person with dementia was offered 10 one-hour sessions. RESULTS: Phase 1: Namaste Care was deemed feasible for community-dwelling people with dementia and no major adaptations to the programme were considered necessary. Phase 2: perceived effects of Namaste Care on people with dementia included improved mood and increased interaction. The programme appeared enriching for both family carers and volunteers, providing joy, respite from care and new insights for coping with challenging behaviour. A flexible attitude of the Namaste provider facilitated its delivery. High caregiver burden and a strained relationship between the family carer and person with dementia were considered barriers. Experiences of family carers and volunteers with Namaste Care were very positive (mean satisfaction rating: 8.7 out of 10, SD=0.9, range 7-10). CONCLUSION: We recommend offering Namaste Care delivered by volunteers, preferably multiple sessions per week of 1.5-2 hours to optimise quality of life of community-dwelling people with dementia. Working with well-matched, flexible Namaste providers is pivotal. Family involvement should be encouraged, although the extent should be adapted depending on preference, caregiver burden and the relationship between the family carer and the person with dementia. TRIAL REGISTRATION NUMBER: NL5570.
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Cuidadores , Demência , Humanos , Cuidadores/psicologia , Demência/terapia , Demência/psicologia , Qualidade de Vida , Países Baixos , Estudos de Viabilidade , Pesquisa Qualitativa , Voluntários , Reino UnidoRESUMO
OBJECTIVE: To describe the development and validation of the Dementia Knowledge Scale (DKS) among family caregivers with a Turkish or Moroccan immigrant background. METHODS: The 11 items of the DKS, selected by professionals and people with a Turkish or Moroccan background, were translated and adapted in Turkish and Dutch. The feasibility, comprehensibility and appropriateness of the 2 language versions were examined. Subsequently, both languages were assessed among caregivers from these groups. The internal consistency of both language versions was determined by calculating Cronbach's α. The known group validity was determined by comparing mean scores between subgroups. RESULTS: Both language versions of the DKS were considered feasible, comprehensible, and appropriate. A total of 117 caregivers with a Turkish background completed the Turkish version of the DKS and 110 with a Moroccan background the Dutch version. The Turkish version showed adequate internal consistency but the Dutch version did not. No differences were found in mean scores between those with a low level of education versus those with a higher level; those who frequently provided care versus those who did so less frequently; and those who lived together with a person with dementia versus those who did not. CONCLUSIONS: The DKS is feasible, comprehensible and reliable and can be used among groups with an immigrant background. PRACTICE IMPLICATIONS: The DKS provides insight into various aspects of dementia knowledge, including knowledge about risk factors and symptoms, among caregivers with a Turkish or Moroccan background, and thereby supports the development of tailored education for these groups.
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Demência , Emigrantes e Imigrantes , Cuidadores , Etnicidade , Humanos , Idioma , Marrocos , Reprodutibilidade dos Testes , Inquéritos e Questionários , TurquiaRESUMO
BACKGROUND: Patients are increasingly expected to take an active role in their own care. Participation in nursing documentation can support patients to take this active role since it provides opportunities to express care needs and preferences. Yet, patient participation in electronic nursing documentation is not self-evident. OBJECTIVE: To explore how home-care patients perceive their participation in electronic nursing documentation. METHODS: Semi-structured interviews were conducted with 21 home-care patients. Interview transcripts were analysed in an iterative process based on the principles of reflexive inductive thematic analysis. RESULTS: We identified a typology with four patient types: 'high need, high ability', 'high need, low ability', 'low need, high ability' and 'low need, low ability'. Several patients felt a need for participation because of their personal interest in health information. Others did not feel such a need since they trusted nurses to document the information that is important. Patients' ability to participate increased when they could read the documentation and when nurses helped them by talking about the documentation. Barriers to patients' ability to participate were having no electronic devices or lacking digital skills, a lack of support from nurses and the poor usability of electronic patient portals. CONCLUSION: Patient participation in electronic nursing documentation varies between patients since home-care patients differ in their need and ability to participate. Nurses should tailor their encouragement of patient participation to individual patients' needs and abilities. Furthermore, they should be aware of their own role and help patients to participate in the documentation. PATIENT OR PUBLIC CONTRIBUTION: Home-care patients were involved in the interviews.
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Serviços de Assistência Domiciliar , Participação do Paciente , Documentação , Humanos , Pesquisa QualitativaRESUMO
BACKGROUND: A high percentage of people dying at home, and a low percentage of people being admitted to hospital and dying there are regarded as indicators of appropriate care at the end of life. However, performance standards for these quality indicators are often lacking, which makes it difficult to state whether an indicator score falls between the ranges of good or poor quality care. The aim of this study was to assess quality indicators concerning place of death and hospital care utilization in people with diseases relevant for palliative care, and to establish best practice performance standards based on indicator scores in 31 regions in the Netherlands. METHODS: A retrospective nationwide population-based observational study was conducted, using routinely collected administrative data concerning persons who died in 2017 in the Netherlands with underlying causes relevant for palliative care (N = 109,707). Data from four registries were linked for analysis. Scores on eight quality indicators concerning place of death and hospital care utilization were calculated, and compared across 31 healthcare insurance regions to establish relative benchmarks. RESULTS: On average, 36.4% of the study population died at home (range between regions 30.5%-42.6%) and 20.4% in hospital (range 16.6%-25.5%). Roughly half of the population who received hospital care at any time in the last year of life were found to (also) receive hospital care in the last month of life. In the last month, 32.0% of the study population were admitted to hospital (range 29.4-36.4%), 5.3% to an Intensive Care Unit (range 3.2-6.9%) and 23.9% visited an Emergency Department (range 21.0-27.4%). In the same time period, less than 1% of the study population was resuscitated in hospital or received tube or intravenous feeding in hospital. CONCLUSIONS: The variation between regions points towards opportunities for practice improvement. The best practice performance standards as set in this study serve as ambitious but attainable targets for those regions that currently do not meet the standards. Policymakers, healthcare providers and researchers can use the suggested performance standards to further analyze causes of variance between regions and develop and test interventions that can improve practice.
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Assistência Terminal , Morte , Humanos , Cuidados Paliativos , Estudos RetrospectivosRESUMO
AIMS: In hospital settings, decisions about potentially life-prolonging treatments are often made in a dialogue between a patient and their physician, with a focus on active treatment. Nurses can have a valuable contribution in this process, but it seems they are not always involved. Our aim was to explore how hospital nurses perceive their current role and preferred role in shared decision-making about potentially life-prolonging treatment in patients in the last phase of life. DESIGN: Cross-sectional quantitative study conducted in the Netherlands in April and May 2019. METHODS: An online survey, using a questionnaire consisting of 12 statements on nurses' opinion about supporting patients in decisions about potentially life-prolonging treatments, and 13 statements on nurses' actual involvement in these decisions. RESULTS: In total 179 hospital nurses from multiple institutions who care for adult patients in the last phase of life responded. Nurses agreed that they should have a role in shared decision-making about potentially life-prolonging treatments, indicating greatest agreement with 'It is my task to speak up for my patient' and 'It is important that my role in supporting patients is clear'. However, nurses also said that in practice they were often not involved in shared decision-making, with least involvement in 'active participation in communication about treatment decisions' and 'supporting a patient with the decision'. CONCLUSION: There is a discrepancy between nurses' preferred role in decision-making about potentially life-prolonging treatment and their actual role. More effort is needed to increase nurses' involvement. IMPACT: Nurses' contribution to decision-making is increasingly considered to be valuable by the nurses themselves, physicians and patients, though involvement is still not common. Future research should focus on strategies, such as training programs, that empower nurses to take an active role in decision-making.
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Tomada de Decisões , Enfermeiras e Enfermeiros , Adulto , Estudos Transversais , Humanos , Papel do Profissional de Enfermagem , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Nursing students frequently experience offensive behaviour and communication problems with patients, clinical supervisors, and nursing and faculty staff. A communication training was developed based on connecting communication to prevent and manage conflict, and build interpersonal trust-based relationships. OBJECTIVES: Feasibility study to evaluate the acceptability, demand, implementation, integration, and limited efficacy of a training based on connecting communication within a nursing curriculum. DESIGN: Mixed method design. PARTICIPANTS: Third-year nursing students (n = 24). SETTING: A Dutch Bachelor of Nursing degree programme in Rotterdam. METHODS: Between November 2019 and March 2020, data were collected from students and trainers, using quantitative and qualitative methods. Feasibility aspects, including limited efficacy testing, were measured with pre- and post-training surveys. Descriptive statistical analyses and (non)parametric tests were used to analyse feasibility aspects and baseline and follow-up scores for empathy, self-compassion, and exposure to violence. In addition, reflection reports of students and two paired interviews with the two trainers were analysed using qualitative content analysis with a deductive approach. RESULTS: The post-training survey and reflection reports showed a positive assessment of the training on acceptability, demand, and integration. Students rated the training as helpful in improving their communication skills and in dealing with conflict situations. Furthermore, they recommended to implement the training in earlier years of the educational programme. According to the trainers, miscommunication, students' lack of preparation for lessons, and the timing of the training prohibited full participation in the training. The pretest-posttest survey results show statistically significant improved self-compassion (3.77 vs. 4.10; p = 0.03) and decreased self-judgement (4.21 vs. 3.50; p = 0.03). Empathy and exposure to violence did not change. CONCLUSIONS: From the perspective of nursing students and trainers involved, this 10-week training based on connecting communication is feasible to implement in the Bachelor of Nursing degree programme, preferably before clinical placements.
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Bacharelado em Enfermagem , Estudantes de Enfermagem , Comunicação , Currículo , Estudos de Viabilidade , HumanosRESUMO
OBJECTIVE: To explore whether nurses in hospital settings experience moral distress when involved in potentially life-prolonging treatments in adults with a short life expectancy. METHODS: A qualitative study using semi-structured interviews. RESULTS: 23 Registered nurses working in inpatient or outpatient hospital settings participated. The nurses stated they were often not involved in decisions regarding life-prolonging treatments. They reported signs of moral distress such as feeling powerless when they when they were not being listened to in the decision-making process and when confronted with negative treatment outcomes. Nurses felt frustrated when their own values were not reflected in the decision-making or when physicians created unrealistic expectations. CONCLUSIONS: Hospital nurses experience moral distress when they are involved in life-prolonging treatment because of the patient's advanced condition and their own lack of involvement in the decision-making process about the treatment. In these situations, moral distress is characterised by feelings of powerlessness and frustration. PRACTICE IMPLICATIONS: Nurses need to be empowered by training programmes that focus on an active role in the decision-making process. Further research is needed to evaluate effective tools and training programmes that help nurses in shared decision-making processes.