Feasibility and effectiveness of communication tools for addressing intimacy and sexuality in patients with cancer: a systematic review.

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.

Task shifting in Dutch nursing practice: A repeated cross-sectional analysis of nurses' experiences.

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.

Improvement of palliative care for people with intellectual disabilities: A multi-site evaluation.

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.

Improving palliative care for people with intellectual disability: a self-assessment of policies, practices and competencies in care services.

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.

Opt-In and Opt-Out Consent Procedures for the Reuse of Routinely Recorded Health Data in Scientific Research and Their Consequences for Consent Rate and Consent Bias: Systematic Review.

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.

Setting up a Governance Framework for Secondary Use of Routine Health Data in Nursing Homes: Development Study Using Qualitative Interviews.

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.

International comparison of professional competency frameworks for nurses: a document analysis.

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.

Mind your words: Oncologists' communication that potentially harms patients with advanced cancer: A survey on patient perspectives.

BACKGROUND: Many complaints in medicine and in advanced illnesses are about communication. Little is known about which specific communications harm. This study explored the perspectives of patients with advanced cancer about potentially harmful communication behaviors by oncologists and helpful alternatives. METHODS: An online survey design was used that was based on literature scoping and patient/clinician/researcher input. Patients with advanced cancer (n = 74) reflected on the potential harmfulness of 19 communication situations. They were asked whether they perceived the situation as one in which communication could be harmful (yes/no). If they answered "yes," they were asked whether they perceived the examples as harmful (yes/no) or helpful (yes/no) and to provide open comments. Results were analyzed quantitatively and qualitatively (content analysis). RESULTS: Communication regarding information provision, prognosis discussion, decision-making, and empathy could be unnecessarily potentially harmful, and this occurred in various ways, such as making vague promises instead of concrete ones (92%), being too directive in decision-making (qualitative), and not listening to the patient (88%). Not all patients considered other situations potentially harmful (eg, introducing the option of refraining from anticancer therapy [49%] and giving too much [prognostic] information [60%]). Exploring each individual patients' needs/preferences seemed to be a precondition for helpful communication. CONCLUSIONS: This article provides patient perspectives on oncologists' unnecessarily potentially harmful communication behaviors and offers practical tools to improve communication in advanced cancer care. Both preventable pitfalls and delicate challenges requiring an individualized approach, where exploration might help, are described. Although providing difficult and unwelcome news is a core task for clinicians, this study might help them to do so while preventing potentially unnecessary harm.

Patient participation in electronic nursing documentation: An interview study among home-care patients.

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.

Evaluating quality of care at the end of life and setting best practice performance standards: a population-based observational study using linked routinely collected administrative databases.

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.

Nurses' perspective on their involvement in decision-making about life-prolonging treatments: A quantitative survey study.

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.

Nursing documentation and its relationship with perceived nursing workload: a mixed-methods study among community nurses.

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.

Psychotropic drug prescription rates in primary care for people with dementia from recorded diagnosis onwards.

BACKGROUND: Psychotropic drugs are frequently prescribed to people with dementia in nursing homes although severe adverse events and side effects are common. Less is known about the prevalence and types of psychotropic drug prescription in primary care for people with dementia. OBJECTIVE: This study examined the prevalence of psychotropic drug prescriptions in primary care among persons with dementia from the year of diagnosis onwards. METHODS: A longitudinal observational study using electronic health record (EHR) data was conducted. People with dementia were selected from EHR data of 451 general practices in the Netherlands. Age and gender-adjusted psychotropic drug prescription rates were calculated per 1000 person-years from the year the dementia diagnosis was first recorded in general practice up to 8 years after diagnosis. RESULTS: Data of 15,687 patients were analyzed. The prescription rate of psychotropic drugs (not including antidementia drugs) was 420 per 1000 person-years (95% CI 409; 431) in the first year after the recorded dementia diagnosis, which increased to 801 per 1000 person-years (95% CI 649; 989) in the eighth year. The most frequently prescribed drugs were antidepressants, antipsychotics, and antidementia drugs, followed by anxiolytics, hypnotics, and antiepileptics. CONCLUSIONS: After a dementia diagnosis is recorded in general practice, the prevalence of psychotropic drug prescriptions is substantial and increases steadily during the disease trajectory of persons with dementia. Although the (in)appropriateness of prescribing was not assessed, these insights may stimulate primary care clinicians to (re)consider their prescription policy of psychotropics for people with dementia more carefully.

Nursing education on palliative care across Europe: Results and recommendations from the EAPC Taskforce on preparation for practice in palliative care nursing across the EU based on an online-survey and country reports.

BACKGROUND: Nurses are the largest regulated group of healthcare professionals involved in palliative care. In 2004, a taskforce of the European Association for Palliative Care (EAPC) launched the 'Guide for development of palliative nurse education in Europe' (hereinafter, the EAPC 2004 Guide). No systematic evaluation of its impact in the development of palliative care education was undertaken. AIMS: To describe current undergraduate and postgraduate nursing education across Europe; to identify the roles that nurses with different palliative care educational levels have in palliative care; and to assess the uptake of the EAPC 2004 Guide in the development of palliative care nursing in Europe. DESIGN: Descriptive research involving an online survey among nursing experts, and the consultation of national representatives. SETTING/PARTICIPANTS: A total of 135 nurses (52% response rate) from 25 countries completed the online survey; representatives from 16 countries were consulted. RESULTS: In 14 (56%) countries, palliative care was not identified as a mandatory subject within undergraduate nursing education. The EAPC 2004 Guide is widely known and was/is being used in many countries to promote palliative care nursing education. Large variations were found across and within country responses. CONCLUSIONS: Palliative care nursing education varies largely in Europe. The wide awareness and use of the EAPC 2004 Guide show how policy measures can influence the development of palliative care education. Recommendations are built and focus on both fostering the use of this guide and implementing policy measures to ensure that palliative care nursing is recognised and certified as a specialty in all European countries.

The Turkish version of the SPPIC validated among informal caregivers with a Turkish immigrant background.

BACKGROUND: This study assesses the internal consistency and known group validity of the Turkish version of the SPPIC, a measurement instrument to assess the self perceived pressure from informal care in family caregivers of people with dementia that was originally in Dutch. METHODS: The feasibility, comprehensibility and appropriateness of the Turkish SPPIC were assessed during a pilot test. Internal consistency was examined based on data from 117 family caregivers with a Turkish immigrant background by calculating Cronbach's alpha and by conducting a single-factor Confirmatory Factor Analysis (CFA). Known group validity was determined to obtain an understanding of the validity of the translated instrument, testing differences in the self-perceived pressure from informal care, depending on frequency of caregiving, living with a person with dementia and level of education. RESULTS: The pilot test showed that the translated SPPIC was considered to be feasible, comprehensible and appropriate. The internal consistency appeared to be strong (Cronbach's alpha: 0.94). The CFA indicated that the factor 'Self-perceived Pressure from Informal Care' explained varying levels of variance in the items of the SPPIC (ranging from .52 to .87). Family caregivers who provided care at least once a week and who shared a home with a person with dementia perceived a greater pressure from informal care (p = 0.007, p = 0.001). CONCLUSIONS: The Turkish translation of the SPPIC can be used in future research and practice to obtain insight into self-perceived pressure from informal care of family caregivers with Turkish immigrant backgrounds. At the same time it is recommended to conduct more research on how the measurement of self-perceived pressure from informal care in this group can be further improved.

Home care nurses more positive about the palliative care that is provided and their own competence than hospital nurses: a nationwide survey.

BACKGROUND: People often prefer to stay at home until the end of life, but hospital admissions are quite common. In previous research bereaved relatives were found to be less positive about palliative care in hospital. However, it was not known how the content and quality of palliative care differ between home care and hospitals from the perspectives of hospital nurses and home care nurses and how palliative care in these settings could be improved. METHODS: A survey was held among hospital and home care nurses, recruited from a nationwide Nursing Staff Panel and through open calls on social media and in an online newsletter. The pre-structured online survey included questions on the palliative care provided, the quality of this care and the respondent's perceived competence in providing palliative care. The questionnaire was completed by 229 home care nurses and 106 hospital nurses. RESULTS: Most nurses provided palliative care in the physical and psychological domains, fewer provided care in the social and spiritual domains. A higher percentage of home care nurses stated that they provided care in these domains than hospital nurses. Overall, 70% of the nurses rated the quality of palliative care as very good to excellent. This percentage was higher among home care nurses (76.4%) than hospital nurses (59.4%). Moreover, a higher percentage of home care nurses (94.4%) stated they felt competent to a great extent to provide palliative care compared to hospital nurses (84.7%). Competencies regarding the physical domain were perceived as better compared to the competencies concerning the other domains. The nurses recommended paying more attention to inter-professional collaboration and communication, timely identification of the palliative phase and advance care planning, and more time available for palliative care patients. CONCLUSION: Although the quality of palliative care was rated as very good to excellent by nurses, improvements can still be made, particularly regarding palliative care in hospitals. Although patients often prefer to die at home rather than in hospital, still a considerable number of people do die in hospital; therefore hospital nurses must also be trained and be able to provide high-quality palliative care.

Addressing challenges in information-provision: a qualitative study among oncologists and women with advanced breast cancer.

BACKGROUND: There is a need for more insight into how to address challenges of information-provision for women with advanced breast cancer. We aimed to explore oncologists' and patients' views on (i) the challenges of information-provision, and (ii) possible strategies to address these challenges, meanwhile (iii) exploring the possible facilitating role of positive expectations and empathy. METHODS: Semi-structured interviews were held with oncologists (n = 10) and women with advanced breast cancer (n = 14). Principles of Thematic Analysis were followed, with two researchers analyzing transcribed data, supported by Atlas.ti software. RESULTS: Taken together the data from oncologists and patients, we found that when communicating with patients with advanced cancer, oncologists face challenges, including handling patients' unrealistic disease (status) beliefs, and choosing approaches for discussing available treatment options and their side effects. Possible strategies to address these challenges include balancing information with acceptance of denial, and using medical expertise to guide treatment discussions. A sensitive issue is whether to discuss the option of no anti-cancer treatment. Meanwhile, approaches and preferences for discussions of side effects vary. Positive expectations and empathy can facilitate information-provision by creating space and helping patients to open up more. CONCLUSIONS: Integrating oncologists' and patients' views, oncologists can provide realistic information while also, temporarily, accepting denial, and can use their medical expertise to address challenges around unrealistic beliefs and discussion of treatment options. Finding ways to tailor discussions of no anti-cancer treatment and side-effect information are needed. Positive expectations and empathy might facilitate - tailored - information-provision, leading ultimately to patient-centered care lying at the heart of medicine.

Patient participation in electronic nursing documentation: an interview study among community nurses.

BACKGROUND: Patient participation in nursing documentation has several benefits like including patients' personal wishes in tailor-made care plans and facilitating shared decision-making. However, the rise of electronic health records may not automatically lead to greater patient participation in nursing documentation. This study aims to gain insight into community nurses' experiences regarding patient participation in electronic nursing documentation, and to explore the challenges nurses face and the strategies they use for dealing with challenges regarding patient participation in electronic nursing documentation. METHODS: A qualitative descriptive design was used, based on the principles of reflexive thematic analysis. Nineteen community nurses working in home care and using electronic health records were recruited using purposive sampling. Interviews guided by an interview guide were conducted face-to-face or by phone in 2019. The interviews were inductively analysed in an iterative process of data collection-data analysis-more data collection until data saturation was achieved. The steps of thematic analysis were followed, namely familiarization with data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and reporting. RESULTS: Community nurses believed patient participation in nursing documentation has to be tailored to each patient. Actual participation depended on the phase of the nursing process that was being documented and was facilitated by patients' trust in the accuracy of the documentation. Nurses came across challenges in three domains: those related to electronic health records (i.e. technical problems), to work (e.g. time pressure) and to the patients (e.g. the medical condition). Because of these challenges, nurses frequently did the documentation outside the patient's home. Nurses still tried to achieve patient participation by verbally discussing patients' views on the nursing care provided and then documenting those views at a later moment. CONCLUSIONS: Although community nurses consider patient participation in electronic nursing documentation important, they perceive various challenges relating to electronic health records, work and the patients to realize patient participation. In dealing with these challenges, nurses often fall back on verbal communication about the documentation. These insights can help nurses and policy makers improve electronic health records and develop efficient strategies for improving patient participation in electronic nursing documentation.

Self-management of patients with advanced cancer: A systematic review of experiences and attitudes.

BACKGROUND: Patients with advanced cancer are increasingly expected to self-manage. Thus far, this topic has received little systematic attention. AIM: To summarise studies describing self-management strategies of patients with advanced cancer and associated experiences and personal characteristics. Also, to summarise attitudes of relatives and healthcare professionals towards patient self-management. DESIGN: A systematic review including non-experimental quantitative and qualitative studies. Data were analysed using critical interpretive synthesis. Included studies were appraised on methodological quality and quality of reporting. DATA SOURCES: MEDLINE, Embase, Cochrane Central, PsycINFO, CINAHL, Web of Science and Google Scholar (until 11 June 2019). RESULTS: Of 1742 identified articles, 31 moderate-quality articles describing 8 quantitative and 23 qualitative studies were included. Patients with advanced cancer used self-management strategies in seven domains: medicine and pharmacology, lifestyle, mental health, social support, knowledge and information, navigation and coordination and medical decision-making (29 articles). Strategies were highly individual, sometimes ambivalent and dependent on social interactions. Older patients and patients with more depressive symptoms and lower levels of physical functioning, education and self-efficacy might have more difficulties with certain self-management strategies (six articles). Healthcare professionals perceived self-management as desirable and achievable if based on sufficient skills and knowledge and solid patient-professional partnerships (three articles). CONCLUSION: Self-management of patients with advanced cancer is highly personal and multifaceted. Strategies may be substitutional, additional or even conflicting compared to care provided by healthcare professionals. Self-management support can benefit from an individualised approach embedded in solid partnerships with relatives and healthcare professionals.

Cost-effectiveness of the Namaste care family program for nursing home residents with advanced dementia in comparison with usual care: a cluster-randomized controlled trial.

BACKGROUND: Dementia is a progressive disease that decreases quality of life of persons with dementia and is associated with high societal costs. The burden of caring for persons with dementia also decreases the quality of life of family caregivers. The objective of this study was to assess the societal cost-effectiveness of Namaste Care Family program in comparison with usual care in nursing home residents with advanced dementia. METHODS: Nursing homes were randomized to either Namaste Care Family program or usual care. Outcome measures of the cluster-randomized trial in 231 residents included Quality of Life in Late-Stage Dementia (QUALID) and the Gain in Alzheimer Care Instrument (GAIN) for family caregivers over 12 months of follow-up. Health states were measured using the EQ-5D-3L questionnaire which were translated into utilities. QALYs were calculated by multiplying the amount of time a participant spent in a specific health state with the utility score associated with that health state. Healthcare utilization costs were estimated using standard unit costs, while intervention costs were estimated using a bottom-up approach. Missing cost and effect data were imputed using multiple imputation. Bootstrapped multilevel models were used after multiple imputation. Cost-effectiveness acceptability curves were estimated. RESULTS: The Namaste Care Family program was more effective than usual care in terms of QUALID (- 0.062, 95%CI: - 0.40 to 0.28), QALY (0.0017, 95%CI: - 0.059 to 0.063) and GAIN (0.075, 95%CI: - 0.20 to 0.35). Total societal costs were lower for the Namaste Care Family program as compared to usual care (- 552 €, 95%CI: - 2920 to 1903). However, these differences were not statistically significant. The probability of cost-effectiveness at a ceiling ratio of 0 €/unit of effect extra was 0.70 for the QUALID, QALY and GAIN. CONCLUSIONS: The Namaste Care Family program is dominant over usual care and, thus, cost-effective, although statistical uncertainty was considerable. TRIAL REGISTRATION: Netherlands Trial Register ( http://www.trialregister.nl/trialreg/index.asp , identifier: NL5570, date of registration: 2016/03/23).