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Dying at home and dying at the preferred place of death are advocated to be desirable outcomes of palliative care. More insight is needed in their usefulness as quality indicators. Our objective is to describe whether \"the percentage of patients dying at home\" and \"the percentage of patients who died in their place of preference\" are feasible and informative quality indicators. A mortality follow-back study was conducted, based on data recorded by representative GP networks regarding home-dwelling patients who died non-suddenly in Belgium (n = 1036), The Netherlands (n = 512), Italy (n = 1639) or Spain (n = 565). \"The percentage of patients dying at home\" ranged between 35.3% (Belgium) and 50.6% (The Netherlands) in the four countries, while \"the percentage of patients dying at their preferred place of death\" ranged between 67.8% (Italy) and 86.0% (Spain). Both indicators were strongly associated with palliative care provision by the GP (odds ratios of 1.55-13.23 and 2.30-6.63, respectively). The quality indicator concerning the preferred place of death offers a broader view than the indicator concerning home deaths, as it takes into account all preferences met in all locations. However, GPs did not know the preferences for place of death in 39.6% (The Netherlands) to 70.3% (Italy), whereas the actual place of death was known in almost all cases. GPs know their patients' actual place of death, making the percentage of home deaths a feasible indicator for collection by GPs. However, patients' preferred place of death was often unknown to the GP. We therefore recommend using information from relatives as long as information from GPs on the preferred place of death is lacking. Timely communication about the place where patients want to be cared for at the end of life remains a challenge for GPs.

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. 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. 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. 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. 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.

Background Health and social services provided at home are becoming increasingly important. Hence, there is a need for information on home care in Europe. The objective of this literature review was to respond to this need by systematically describing what has been reported on home care in Europe in the scientific literature over the past decade. Methods A systematic literature search was performed for papers on home care published in English, using the following data bases: Cinahl, the Cochrane Library, Embase, Medline, PsycINFO, Sociological Abstracts, Social Services Abstracts, and Social Care Online. Studies were only included if they complied with the definition of home care, were published between January 1998 and October 2009, and dealt with at least one of the 31 specified countries. Clinical interventions, instrument developments, local projects and reviews were excluded. The data extracted included: the characteristics of the study and aspects of home care 'policy & regulation', 'financing', 'organisation & service delivery', and 'clients & informal carers'. Results Seventy-four out of 5,133 potentially relevant studies met the inclusion criteria, providing information on 18 countries. Many focused on the characteristics of home care recipients and on the organisation of home care. Geographical inequalities, market forces, quality and integration of services were also among the issues frequently discussed. Conclusions Home care systems appeared to differ both between and within countries. The papers included, however, provided only a limited picture of home care. Many studies only focused on one aspect of the home care system and international comparative studies were rare. Furthermore, little information emerged on home care financing and on home care in general in Eastern Europe. This review clearly shows the need for more scientific publications on home care, especially studies comparing countries. A comprehensive and more complete insight into the state of home care in Europe requires the gathering of information using a uniform framework and methodology.

Background The time that nurses spent on documentation can be substantial and burdensome. To date it was unknown if documentation activities are related to the workload that nurses perceive. A distinction between clinical documentation and organizational documentation seems relevant. This study aims to gain insight into community nurses’ views on a potential relationship between their clinical and organizational documentation activities and their perceived nursing workload. Methods A convergent mixed-methods design was used. A quantitative survey was completed by 195 Dutch community nurses and a further 28 community nurses participated in qualitative focus groups. For the survey an online questionnaire was used. Descriptive statistics, Wilcoxon signed-ranked tests, Spearman’s rank correlations and Wilcoxon rank-sum tests were used to analyse the survey data. Next, four qualitative focus groups were conducted in an iterative process of data collection - data analysis - more data collection, until data saturation was reached. In the qualitative analysis, the six steps of thematic analysis were followed. Results The majority of the community nurses perceived a high workload due to documentation activities. Although survey data showed that nurses estimated that they spent twice as much time on clinical documentation as on organizational documentation, the workload they perceived from these two types of documentation was comparable. Focus-group participants found organizational documentation particularly redundant. Furthermore, the survey indicated that a perceived high workload was not related to actual time spent on clinical documentation, while actual time spent on organizational documentation was related to the perceived workload. In addition, the survey showed no associations between community nurses’ perceived workload and the user-friendliness of electronic health records. Yet focus-group participants did point towards the impact of limited user-friendliness on their perceived workload. Lastly, there was no association between the perceived workload and whether the nursing process was central in the electronic health records. Conclusions Community nurses often perceive a high workload due to clinical and organizational documentation activities. Decreasing the time nurses have to spend specifically on organizational documentation and improving the user-friendliness and intercommunicability of electronic health records appear to be important ways of reducing the workload that community nurses perceive.

Background In the future, an increasing number of elderly people will be asked to accept care delivered through the Internet. For example, health-care professionals can provide treatment or support via telecare. But do elderly people intend to use such so-called e-Health applications? The objective of this study is to gain insight into the intention of older people, i.e. the elderly of the future, to use e-Health applications. Using elements of the Unified Theory of Acceptance and Use of Technology (UTAUT), we hypothesized that their intention is related to the belief that e-Health will help (performance expectancy), the perceived ease of use (effort expectancy), the beliefs of important others (social influence), and the self-efficacy concerning Internet usage. Methods A pre-structured questionnaire was completed by 1014 people aged between 57 and 77 (response 67%). The hypothesized relationships were tested using nested linear regression analyses. Results If offered an e-Health application in the future, 63.1% of the respondents would definitely or probably use it. In general, people with a lower level of education had less intention of using e-Health. The majority of respondents perceived e-Health as easy to use (60.8%) and easy to learn (68.4%), items that constitute the scale for effort expectancy. Items in the performance expectancy scale generally scored lower: 45.8% perceived e-Health as useful and 38.2% perceived it as a pleasant way to interact. The tested model showed that expected performance and effort were highly related to intention to use e-Health. In addition, self-efficacy was related to intention to use while social influence was not. Conclusions Acceptance of e-Health can be increased by informing people about the potential benefits of e-Health and letting them practice with the application. Special attention should be paid to people with less education and people who have not used the Internet before.

Background A growing number of countries are introducing some form of nurse prescribing. However, international reviews concerning nurse prescribing are scarce and lack a systematic and theoretical approach. The aim of this review was twofold: firstly, to gain insight into the scientific and professional literature describing the extent to and the ways in which nurse prescribing has been realised or is being introduced in Western European and Anglo-Saxon countries; secondly, to identify possible mechanisms underlying the introduction and organisation of nurse prescribing on the basis of Abbott's theory on the division of professional labor. Methods A comprehensive search of six literature databases and seven websites was performed without any limitation as to date of publication, language or country. Additionally, experts in the field of nurse prescribing were consulted. A three stage inclusion process, consisting of initial sifting, more detailed selection and checking full-text publications, was performed independently by pairs of reviewers. Data were synthesized using narrative and tabular methods. Results One hundred and twenty-four publications met the inclusion criteria. So far, seven Western European and Anglo-Saxon countries have implemented nurse prescribing of medicines, viz., Australia, Canada, Ireland, New Zealand, Sweden, the UK and the USA. The Netherlands and Spain are in the process of introducing nurse prescribing. A diversity of external and internal forces has led to the introduction of nurse prescribing internationally. The legal, educational and organizational conditions under which nurses prescribe medicines vary considerably between countries; from situations where nurses prescribe independently to situations in which prescribing by nurses is only allowed under strict conditions and supervision of physicians. Conclusions Differences between countries are reflected in the jurisdictional settlements between the nursing and medical professions concerning prescribing. In some countries, nurses share (full) jurisdiction with the medical profession, whereas in other countries nurses prescribe in a subordinate position. In most countries the jurisdiction over prescribing remains predominantly with the medical profession. There seems to be a mechanism linking the jurisdictional settlements between professions with the forces that led to the introduction of nurse prescribing. Forces focussing on efficiency appear to lead to more extensive prescribing rights.

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.

Background People with activity limitations participate less in society, which may be due to both societal barriers and personal factors. The aim of this study was to examine the role of one specific personal factor, namely the perceptions that people have of their health condition. We hypothesized that perceptions of more personal control and less negative consequences increase the likelihood of participation in social activities and of experiencing autonomy in participation. Methods Survey data of 1681 people with activity limitations participating in a Dutch nationwide panel-study were analyzed by means of logistic and linear regression analyses. Perceptions of the health condition were assessed with the revised Illness Perception Questionnaire (IPQ-R). Social participation was operationalized as doing volunteer work, participating in club activities and meeting friends. Two scales of the Impact on Participation and Autonomy questionnaire were used to assess experienced autonomy regarding participation. Results People who perceived more personal control over their health condition were more likely to participate in volunteer work (OR = 1.36) and club activities (OR = 1.35). People who believed their condition to be long-lasting were also more likely to do volunteer work (OR = 1.34), whereas people who reported a better understanding of their condition were more likely to frequently meet friends (OR = 1.19). Perceptions of the health condition explained 14% of the variance in experienced autonomy in participation, in addition to the severity of participants’ activity limitations and their age, gender and education level. Especially a belief in more serious consequences, a perception of a long-lasting and less controllable condition, a perception of less understanding of the condition and a greater perceived impact on the emotional state were associated with experiencing less autonomy in participation. Conclusions People with activity limitations who experience less control over their condition participate less in volunteer work and club activities than people who experience more control. Perceptions of the health condition are just as important to explain differences in participation as the severity of people’s activity limitations and their socio-demographic characteristics. Health and social care professionals should pay attention to people’s perceptions, to help people with activity limitations to participate according to their needs, circumstances, and preferences.

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.

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. 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. 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. 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. 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.