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Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Background: Informal care features high on the policy agenda of many countries to deal with workforce shortages. As a consequence, care provision increasingly takes place in the care triad of care recipients, informal caregivers and care professionals. How collaboration between care partners takes shape depends on how the different partners perceive this collaboration. This paper aims to investigate the relative importance of the different aspects of collaboration from the perspectives of care recipients, informal caregivers and care professionals in the context of the care for older persons in The Netherlands. Methods: Using Q‐methodology, 32 participants ranked 28 statements that reflect different aspects of collaboration in the care triad and explained their ranking during a follow‐up interview. Participants comprised 9 older persons, 10 informal caregivers and 13 care professionals. Data were analysed using by‐person factor analysis to identify common patterns in the rankings of the statements. Emerging patterns were interpreted and described as views on collaboration using aggregated rankings and qualitative data from the interviews. Results: Five distinct views on collaboration were found: (1) Emphasizing warm collaboration, (2) trusting care professional's expertise, (3) open and compassionate care professionals, (4) responsive decision‐making by autonomous care professionals and (5) prioritizing care recipient's and informal caregiver's interests. Care recipients and/or informal caregivers were associated with views 1, 3 and, 5, whereas care professionals were associated with all five views. Conclusions: Our study highlights the importance of recognizing the potential diversity of views between and within different partner groups in care triads. Governmental and organizational policy makers, as well as healthcare professionals who aim to increase or support the involvement of informal caregivers, should take this heterogeneity into consideration. Patient or Public Contribution: An advisory board of older persons (care recipients and informal caregivers) was involved in the recruitment of the participants, the formulation of the statements and the reflection on the findings of the study and potential implications. [ABSTRACT FROM AUTHOR]

Background: Given the developmental vulnerability of justice-involved youth, providing a safe environment in secure facilities is a paramount, yet challenging task. Within this complexity, a sound security framework is key. The security framework exists on three dimensions: physical, procedural and relational security. Existing knowledge points at the importance of a shift in focus on physical and procedural security towards relational security as the core of the security framework. At the same time there is a dearth of knowledge on relational security, particularly in the context of youth justice. This paper explores relational security and its working mechanisms in practice. Methods: This paper draws on findings of a comprehensive three-year evaluation of three small-scale, community-embedded facilities that are grounded in relational security. The approach of the evaluation was derived from action research, involving a cyclic process alternating between action, research and critical reflection, while engaging all stakeholders in the research process. The action research cycle involved qualitative research (a total of 63 semi-structured interviews) incorporating the perspective of staff, youth and parents. Results: Relational security is grounded in three distinct, but interrelated, elements – staff's basic attitude, a constructive alliance between staff and youth, staff presence – and promotes a safe and therapeutic environment through several mechanisms. Conclusions: Relational security can be defined in a practical conceptualization; outlining a way of working that guides staff in how to establish a safe and therapeutic environment in secure facilities. This conceptualization finds support in the well-established literature covering the therapeutic alliance and can be substantiated by two aligning theories concerning youth justice strategies: social-ecological theory and self-determination theory. Relational security is not only a way of working, but also a way of being. It encompasses a vision about security and mentality towards justice-involved youth that sees them not merely as 'risks to be managed', but primarly as 'resources to be developed'. [ABSTRACT FROM AUTHOR]

Background: Continuous monitoring using wireless wearable sensors is a promising solution for use in clinical practice and in the home setting. It is important to involve nurses to ensure successful implementation. This paper aims to provide an overview of 1) factors affecting implementation of continuous monitoring using wireless wearable sensors by evaluating nurses' experiences with its use on the nursing ward, and 2) nurses' expectations for use in the home setting. Methods: Semi-structured interviews were conducted with 16 nurses from three teaching hospitals in the Netherlands, covering constructs from the Consolidated Framework for Implementation Research (CFIR). A deductive approach of directed content analysis was applied. One additional factor was added using the Unified Theory for Acceptance of Technology (UTAUT). The quotes and domains were rated on valence (positive, neutral, negative) and strength (strong: − 2, + 2, neutral 0, and weak: − 1, + 1). Results: Data was collected on 27 CFIR constructs and 1 UTAUT construct. In the experience of at least 8 nurses, five constructs had a strong positive influence on implementation on the nursing ward, including relative advantage (e.g., early detection of deterioration), patient needs and resources (e.g. feeling safe), networks and communications (e.g. execute tasks together), personal attributes (e.g. experience with intervention), and implementation leaders (e.g., project leader). Five constructs had a strong negative influence: evidence strength and quality (e.g. lack of evidence from practical experience), complexity (e.g. number of process steps), design quality and packaging (e.g., bad sensor quality), compatibility (e.g, change in work) and facilitating conditions (e.g, Wi-Fi connection). Nurses expected continuous monitoring in the home setting to be hindered by compatibility with work processes and to be facilitated by staff's access to information. Technical facilitating conditions (e.g. interoperability) were suggested to be beneficial for further development. Conclusions: This paper provides an overview, of factors influencing implementation of continuous monitoring including relative importance, based on nurses' experiences with use on nursing wards, and their perspectives for use in the home setting. Implementation of continuous monitoring is affected by a wide range of factors. This overview may be used as a guideline for future implementations. [ABSTRACT FROM AUTHOR]

Introduction: Network platforms are interesting for integrated care governance as they seek solutions for the problem of competition and tensions between networks. In this paper, we analyse how a network platform functions for the actors involved, and how it is used in their work. Methods: We employed a case study in a Dutch urbanised hospital region, and conducted 17 interviews with hospital physicians, directors, and supporting staff who are involved in a network platform called “BeterKeten” (BK). Results: Actors assign different functions and purposes to BK: facilitating and legitimising professional (learning) communities; adapting to a changing policy context; enlarging professionals’ and the networks’ circle of influence; and extending governing possibilities. Network platform’ dynamics and frictions entail changing professional and managerial practices; embedding a BK network in a partner network; and alignment of (conflicting) network platforms. Discussion: Network platforms are a promising strategy to govern, facilitate, and nurture network-building actions to enhance integrated care, offering new ways of working to cope with its multi-level nature. Conclusion: BK is a dynamic actor with steering capacities that enables the coexistence of multiple purposes. Further research could pay attention to how network platforms are able to develop modalities of integrated care governance that suit healthcare system’s networked character. [ABSTRACT FROM AUTHOR]

Background: Community engagement is seen as key to citizen‐centred and sustainable healthcare systems as involving citizens in the designing, implementation and improvement of services and policies is thought to tailor these more closely to communities' own needs and experiences. Organizations have struggled to reach out to and involve disadvantaged citizens. This paper examines how if, why, and when low‐income citizens wish to be involved. Methods: For this qualitative realist case‐study, 19 interviews (one dyad) were held with (20) low‐income citizens in two Dutch municipalities. Additionally, the results were discussed with a reference panel consisting of professionals and citizens to enrich the results and to ensure the results had face validity. Results: The results showed four different ways in which low‐income citizens wished to be involved: (a) in a practical/volunteer way; (b) as a buddy; (c) as a lay expert; (d) not involved at all. The factors affecting citizens' interest and capacity to participate include citizens' own experiences of the services they access and their personal situations, e.g. their mental or physical health, extent of financial crisis, family situation, home environment. None of the interviewees was currently involved, but all had ideas for improving health(care) services and policies. Citizens' experiences of the services they accessed acted as a motivator for some to be involved as they wanted to ensure others would not have the same struggles, while for others their own needs and an apathetic system remained too high a barrier. To enable involvement, citizens need continued support for their own health(care) and financial situation, better communication and accessibility from services, practical support (e.g., training and bus passes) and recognition for their input (e.g., monetary compensation). Conclusion: The study shows that citizens' experiences of the services they accessed influenced if and how they wanted to be involved with health and care services. Despite the fact that all participants had shared solid ideas for improving services and policies, they were hindered by a bureaucratic, impersonal and inaccessible system. Organizations seem to underestimate the required investments to reach out to low‐income citizens and the support required to ensure their involvement. Patient and Public Involvement (PPI) in Study: Citizens as well as PPI organizations were members of the reference panel who helped formulate the research questions and recruitment strategy. The local reference panel also helped to interpret and refine the initial findings. [ABSTRACT FROM AUTHOR]

Purpose: Self-reliance and social participation are strongly promoted by social policy. Both concepts are linked to the concept of vulnerability, for people who do not meet these standards are labelled "vulnerable people". In this paper, the insider's perspective takes central stage by seeking to explore what it means to be labelled a "vulnerable person", and through this to further our insight into the meaning of the concept of vulnerability. Method: Thirty-three in-depth interviews were conducted with 16 allegedly vulnerable people. The data were subjected to thematic content analysis. Results: Our analysis revealed three main dimensions and eight sub-dimensions of perceived vulnerability, outlining an insider's concept of vulnerability. This concept includes manifestations of vulnerability, feelings coexisting with vulnerability, and the image of vulnerable people. Conclusion: The perception of vulnerability changes when interacting with others in society, especially with social policy implementers. In this interaction, the perceived vulnerability increases and becomes societal vulnerability. It concerns a dependency situation in which one's strength and self-determination are not recognized, and the help needed is not provided. By acknowledging the insider's perspective, social policy can fulfil a more empowering role towards "vulnerable people" and contribute to people's well-being. [ABSTRACT FROM AUTHOR]

Background: To guide the development of high‐quality care for people with multiple chronic conditions, partners of the European Joint Action CHRODIS developed the Integrated Multimorbidity Care Model. To assess its suitability for improving care for people with multimorbidity in the Netherlands, the model was piloted in a primary care setting with both patients and care providers. Aim: This paper reports on the patient perspective, and aims to explore the priorities, underlying values and preferences for care of people with multimorbidity. Participants and methods: Twenty persons with multimorbidity (selected from general practice registries) participated in a focus group or telephone interview. Subsequently, a questionnaire was completed by 863 persons with multimorbidity registered with 14 general practices. Qualitative data were thematically analysed and quantitative data by means of descriptive statistics. Results: Frequently prioritized elements of care were the use of shared electronic health records, regular comprehensive assessments, self‐management support and shared decision making, and care coordination. Preferences for how these elements should be specifically addressed differed according to individual values (eg weighing safety against privacy) and needs (eg ways of coping with multimorbidity). Conclusion: The JA‐CHRODIS Integrated Multimorbidity Care Model reflects the priorities and preferences for care of people with multimorbidity in the Netherlands, which supports its relevance to guide the development of person‐centred integrated care for people with multiple chronic conditions in the Netherlands. Patient contribution: European patient experts contributed to the development and applicability assessment of the JA‐CHRODIS Integrated Multimorbidity Care Model; Dutch patients participated in focus groups, interviews and a survey. [ABSTRACT FROM AUTHOR]

Background: One of the strategies to promote the quality of palliative care in non-specialised settings is the appointment of palliative care nurse champions. It is unclear what the most effective model to implement the concept of nurse champions is and little is known about palliative care nurse champions' own views on their role and responsibilities. This paper aims to describe views of palliative care nurse champions in hospitals and home care on their role, responsibilities and added value. Methods: In 2018, a qualitative interview study was conducted with 16 palliative care nurse champions in two hospitals and four home care organisations in the southwest of the Netherlands. The framework approach was used to analyse the data. Results: Most palliative care nurse champions described their role by explaining concrete tasks or activities. Most nurse champions perceive their main task as disseminating information about palliative care to colleagues. A few nurses mentioned activities aimed at raising awareness of palliative care among colleagues. Most nurses were to a limited extent involved in collaboration with the palliative care expert team. Hospital nurse champions suggested that more support from the palliative care expert team would be helpful. Most nurse champions feel little responsibility for organisational tasks and inter-organisational collaboration. Especially hospital nurses found it difficult to describe their role. Conclusion: The role of palliative care nurse champions in hospital and home care varies a lot and nurses have diverging views on palliative care in these settings. Comprehensively fulfilling the role of palliative care nurse champion is a challenge. Careful selection, training, support and task descriptions for nurse champions are needed to make the concept of nurse champions work in palliative care. [ABSTRACT FROM AUTHOR]

Background: Depression is common in patients with diabetes type 2 (DM2) and/or coronary heart disease (CHD), with high personal and societal burden and may even be preventable. Recently, a cluster randomized trial of stepped care to prevent depression among patients with DM2 and/or CHD and subthreshold depression in Dutch primary care (Step-Dep) versus usual care showed no effectiveness. This paper presents its process evaluation, exploring in-depth experiences from a patient and practice nurse perspective to further understand the results. Methods: A qualitative study was conducted. Using a purposive sampling strategy, data were collected through semi-structured interviews with 24 participants (15 patients and nine practice nurses). All interviews were audiotaped and transcribed verbatim. Atlas.ti 5.7.1 software was used for coding and structuring of themes. A thematic analysis of the data was performed. Results: The process evaluation showed, even through a negative trial, that Step-Dep was perceived as valuable by both patients and practice nurses; perceived effectiveness on improving depressive symptoms varied greatly, but most felt that it had been beneficial for patients' well-being. Facilitators were: increased awareness of mental health problems in chronic disease management and improved accessibility and decreased experienced stigma of receiving mental health care. The Patient Health Questionnaire 9 (PHQ-9), used to determine depression severity, functioned as a useful starting point for the conversation on mental health and patients gained more insight into their mental health by regularly filling out the PHQ-9. However, patients and practice nurses did not widely support its use for monitoring depressive symptoms or making treatment decisions. Monitoring mental health was deemed important in chronically ill patients by both patients and practice nurses and was suggested to start at the time of diagnosis of a chronic disease. Appointed barriers were that patients were primarily motivated to participate in scientific research rather than their intrinsic need to improve depressive symptoms. Additionally, various practice nurses preferred offering individually based therapy over pre-determined interventions in a protocolled sequence and somatic practice nurses expressed a lack of competence to recognise and treat mental health problems. Conclusion: This study demonstrates both the benefits and unique demands of programs such as Step-Dep. The appointed facilitators and barriers could guide the development of future studies aiming to prevent depression in similar patient groups. [ABSTRACT FROM AUTHOR]

Background: Medication non-adherence is a complex health care problem. Due to non-adherence, substantial numbers of cardiovascular patients benefit from their medication to only a limited extent. In order to improve adherence, a variety of pharmacist-led interventions have been developed. However, even the most effective interventions achieved only a modest positive effect. To be effective, interventions should be targeted at underlying barriers to adherence, developed in a systematic manner and tailored to specific features of a target group and setting. The current paper describes the design of the Cardiovascular medication non-Adherence Tailored Intervention (CATI) study aimed to evaluate the (cost-)effectiveness of a patient-tailored intervention programme in patients using antihypertensive medication.Methods: The CATI study is a randomised controlled trial that will be performed in 13 community pharmacies. Patients aged 45-75 years using antihypertensive medication and considered non-adherent according to pharmacy dispensing data, as well according to a self-report questionnaire, are eligible to participate. Patients in the intervention condition will receive a patient-tailored, pharmacist-led intervention programme. This programme consists of a structured interview at the pharmacy to identify patients' barriers to adherence and to counsel patients in order to overcome these barriers. The primary outcome is self-reported medication adherence measured with the MARS-5 questionnaire. Secondary outcome measures are blood pressure, illness perceptions, quality of life and societal costs. A cost-effectiveness analysis and process evaluation will also be performed.Discussion: This study will provide insight into the (cost-)effectiveness of a patient-tailored, pharmacist-led intervention programme in non-adherent patients using antihypertensive medication. This intervention programme allows community pharmacists to support their patients in overcoming barriers to adherence and improving medication adherence in a structured and patient-tailored manner. An effective intervention will not only enhance medication adherence, but may also improve health outcomes and decrease health care utilisation and costs.Trial Registration: Netherlands Trial Register (identifier: NTR5017), registered on 2 February 2015. [ABSTRACT FROM AUTHOR]

Background: The "health workforce" crisis has led to an increased interest in health professional education, including MPH programs. Recently, it was questioned whether training of mid- to higher level cadres in public health prepared graduates with competencies to strengthen health systems in low- and middle-income countries. Measuring educational impact has been notoriously difficult; therefore, innovative methods for measuring the outcome and impact of MPH programs were sought. Impact was conceptualized as "impact on workplace" and "impact on society," which entailed studying how these competencies were enacted and to what effect within the context of the graduates' workplaces, as well as on societal health.Methods: This is part of a larger six-country mixed method study; in this paper, the focus is on the qualitative findings of two English language programs, one a distance MPH program offered from South Africa, the other a residential program in the Netherlands. Both offer MPH training to students from a diversity of countries. In-depth interviews were conducted with 10 graduates (per program), working in low- and middle-income health systems, their peers, and their supervisors.Results: Impact on the workplace was reported as considerable by graduates and peers as well as supervisors and included changes in management and leadership: promotion to a leadership position as well as expanded or revitalized management roles were reported by many participants. The development of leadership capacity was highly valued amongst many graduates, and this capacity was cited by a number of supervisors and peers. Wider impact in the workplace took the form of introducing workplace innovations such as setting up an AIDS and addiction research center and research involvement; teaching and training, advocacy, and community engagement were other ways in which graduates' influence reached a wider target grouping. Beyond the workplace, an intersectoral approach, national reach through policy advisory roles to Ministries of Health, policy development, and capacity building, was reported. Work conditions and context influenced conduciveness for innovation and the extent to which graduates were able to have effect. Self-selection of graduates and their role in selecting peers and supervisors may have resulted in some bias, some graduates could not be traced, and social acceptability bias may have influenced findings.Conclusions: There was considerable impact at many levels; graduates were perceived to be able to contribute significantly to their workplaces and often had influence at the national level. Much of the impact described was in line with public health educational aims. The qualitative method study revealed more in-depth understanding of graduates' impact as well as their career pathways. [ABSTRACT FROM AUTHOR]

Background: Low participation rates among ethnic minorities in preventive healthcare services are worrisome and not well understood. The objective of this study was to explore how adults of Turkish and Moroccan origin living in the Netherlands, aged 45 years and older, can be reached to participate in health checks for cardio-metabolic diseases and follow-up (lifestyle) advice. Methods: This mixed-methods study used a convergent parallel design, to combine data of one quantitative study and three qualitative studies. Questionnaire data were included of 310 respondents, and interview data from 22 focus groups and four individual interviews. Participants were recruited via a research database, general practitioners and key figures. Quantitative data were analysed descriptively and qualitative data were analysed using a thematic approach. Results: Regarding health checks, 50 % (95 % G 41;59) of the Turkish questionnaire respondents and 66 % (95 % G 57;76) of the Moroccan questionnaire respondents preferred an invitation from their general practitioner. The preferred location to fill out the health check questionnaire was for both ethnic groups the general practitioner's office or at home, on paper. Regarding advice, both groups preferred to receive advice at individual level rather than in a group, via either a physician or a specialised healthcare professional. It was emphasised that the person who gives lifestyle advice should be familiar with the (eating) habits of the targeted individual. Sixty-one percent (95 % G 53;69) of the Turkish respondents preferred to receive information in their native language compared to 37 % (95 % G 29;45) of the Moroccan respondents. Several participants mentioned a low proficiency in the local language as an explanation for their preference to fill out the health check questionnaire at home, to receive advice from an ethnic-matched professional, and to receive information in their native language. Conclusions: The general practitioner is considered as a promising contact to reach adults of Turkish and Moroccan origin for health checks or (lifestyle) advice. It might be necessary to provide information in individuals' native language to overcome language barriers. In addition, (lifestyle) advice must be tailored. The obtained insight into preferences of Turkish and Moroccan adults regarding reach for preventive healthcare services could help professionals to successfully target these groups. [ABSTRACT FROM AUTHOR]

Background: A personal health record (PHR) is an online application through which individuals can access, manage, and share their health information in a private, secure, and confidential environment. Personal health records empower patients, facilitate collaboration among healthcare professionals, and improve health outcomes. Given these anticipated positive effects, we want to implement a PHR, named MyPregn@ncy, in a Dutch maternity care setting and to evaluate its effects in routine care. This paper presents the study protocol.Methods/design: The effects of implementing a PHR in maternity care on patients and professionals will be identified in a stepped-wedge, cluster-randomised, controlled trial. The study will be performed in the region of Nijmegen, a Dutch area with an average of 4,500 births a year and more than 230 healthcare professionals involved in maternity care. Data analyses will describe the effects of MyPregn@ncy on health outcomes in maternity care, quality of care from the patients' perspectives, and collaboration among healthcare professionals. Additionally, a process evaluation of the implementation of MyPregn@ncy will be performed. Data will be collected using data from the Dutch perinatal registry, questionnaires, interviews, and log data.Discussion: The study is expected to yield new information about the effects, strengths, possibilities, and challenges to the implementation and usage of a PHR in routine maternal care settings. Results may lead to new insights and improvements in the quality of maternal and perinatal care.Trial Registration: Netherlands Trial Register: NTR4063. [ABSTRACT FROM AUTHOR]

Background: Professionals and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This is a specific type of care that may require a different approach to the focus on participation that currently characterizes the care for people with ID. This paper describes the shifts in care approaches and attitudes that relatives and professionals perceive as the death of a person with ID approaches, as well as the values underlying these shifts. Methods: A qualitative design was used to reconstruct the cases of twelve recently deceased people with ID. Relatives and professionals who were closest to the person at the end of their life were interviewed. Interviews were transcribed verbatim and data were analyzed inductively, using elements of thematic analysis. Results: Five shifts were found: 1) adapting to a new strategy of comforting care, taking over tasks and symptom relief, 2) interweaving of emotional and professional involvement, 3) stronger reliance on the joint interpretation of signals expressing distress and pain, 4) magnified feeling of responsibility in medical decisions, 5) intensified caring relationship between ‘two families': relatives and care staff. Six relational values were behind these shifts: ‘being there’ for the person with ID, ‘being responsive’ to the person's needs, ‘reflection' on their own emotions and caring relationships, ‘attentiveness' to the ID person's wishes and expressions of distress, ‘responsibility' for taking joint decisions in the best interests of the person, and ‘openness to cooperation and sharing' the care with others. Conclusions: End-of-life care for people with ID involves curtailing expectations of participation and skill acquirement, and an increase in teamwork featuring intensified comforting care, symptom management and medical decision making. Three caring relationships need to be fostered: the relationship with the person with ID, relationships among professionals and the relationship between relatives and professionals. ID care services should invest particularly in the emotional support and expertise level of care staff, and in the collaboration between relatives and professionals. [ABSTRACT FROM AUTHOR]

Background The nationwide integration of palliative care best practices into general care settings is challenging but important in improving the quality of palliative care. This is why the Dutch National Quality Improvement Programme for Palliative Care has recently been launched. This four-year programme consists of about 70 implementation trajectories of best practices. A large evaluation study has been set up to evaluate this national programme and separate implementation trajectories. Methods/design This paper presents the protocol of the evaluation study consisting of a quantitative effect evaluation and a qualitative process evaluation. The effect evaluation has a pre-test post-test design, with measurements before implementation (month 0) and after implementation (month 9) of a best practice. Patients are eligible if they have a life expectancy of less than six months and/or if they are undergoing palliative treatment and provided they are physically and mentally capable of responding to questionnaires. Bereaved relatives are eligible if they have been involved in the care of a deceased patient who died after a sickbed between six weeks and six months ago. Three types of measurement instruments are used: (1) numerical rating scales for six symptoms (pain, fatigue, breathlessness, obstipation, sadness and anxiety), (2) the Consumer Quality Index Palliative Care - patient version and (3) the version for bereaved relatives. The process evaluation consists of analysing implementation plans and reports of the implementation, and individual and group interviews with healthcare professionals. This will be done nine to eleven months after the start of the implementation of a best practice. Discussion This mixed-method evaluation study gives more insight into the effects of the total programme and the separate implementation trajectories. However, evaluation of large quality improvement programmes is complicated due to changing, non-controlled environments. Therefore, it is important that an effect evaluation is combined with a process evaluation. [ABSTRACT FROM AUTHOR]

Background: Tobacco companies consistently work to prevent and undermine smoke-free laws. The tobacco industry and its allies have funded hospitality associations and other third parties to oppose smoke-free laws, argue that smoke-free laws will economically damage hospitality venues, promote ventilation and voluntary smoker ‘accommodation’ as an alternative to smoke-free laws, and to challenge smoke-free laws in court. In 2008, the Netherlands extended its smoke-free law to hospitality venues. Methods: We triangulated news articles, government documents, scientific papers, statistical reports and interviews to construct this case study. Results: Despite widespread public support for smoke-free hospitality venues, opponents successfully represented these laws as unpopular and damaging to small bars. These challenges and related smokers’ rights activities resulted in non-compliance among all bars and reinstating an exemption for small, owner-run venues. This policy reversal was the result of a weak implementing media campaign (which failed to present the law as protecting nonsmokers), smoking room exemptions and reactive (vs. proactive) measures by the Ministry of Health and civil society. Conclusion: The policy failure in the Netherlands is the result of poor implementation efforts and the failure to anticipate and deal with opposition to the law. When implementing smoke-free laws it is important to anticipate opposition, used the media to target non-smokers to reinforce public support, and actively enforce the law. [ABSTRACT FROM PUBLISHER]

Background: People experiencing homelessness often encounter progressive incurable somatic diseases in combination with psychiatric and psychosocial problems, and many need palliative care at the end of their lives. Little is known about how palliative care for this group can be started in good time and provided optimally. The objective of this paper is to give insight into the extent people experiencing homelessness have access to good palliative care. Methods: Qualitative in-depth interviews were held to reconstruct the cases of 19 people experiencing homelessness in the Netherlands. Eight cases concerned persons being in the palliative phase (using the surprise question) and the other 11 cases concerned persons recently died after a period of ill health due to somatic illness. We used purposive sampling until data saturation was reached. The total number of interviews was 52. All interviews were transcribed verbatim and analysed inductively. Results: Three key themes were: 'late access', 'capricious trajectory' and 'complex care'. The first key theme refers to the often delayed start of palliative care, because of the difficulties in recognizing the need for palliative care, the ambivalence of people experiencing homelessness about accepting palliative care, and the lack of facilities with specific expertise in palliative care for them. The second key theme refers to the illness trajectory, which is often capricious because of the challenging behaviour of people experiencing homelessness, an unpredictable disease process and a system not being able to accommodate or meet their needs. The third key theme refers to the complexity of their care with regard to pain and symptom control, psychosocial and spiritual aspects, and the social network. Conclusions: The care for in the palliative phase does not satisfy the core requirements of palliative care since there are bottlenecks regarding timely identification, the social network, and the assessment and management of physical symptoms and psychosocial and spiritual care needs. Education in palliative care of outreach professionals, training staff in shelters in the provision of palliative care, and building a network of palliative care specialists for people experiencing homelessness. [ABSTRACT FROM AUTHOR]

Background: The specific palliative care needs and problems of patients with a substance use disorder and multiple problems, and those of their proxies, are under recognized Besides, the organization of palliative care, including the division of health care professionals' responsibilities, is often unclear. Perspectives of patients and proxies are hardly known. We describe the outline of a study designed to explore how palliative care for patients with a substance use disorder is organized in the Netherlands and to explore problems and needs, as well as possible improvements from the healthcare professionals', patients' and proxies' perspective. The aim of this protocol paper is to provide insights in ways to conduct research with vulnerable research participants and to offer a detailed description of the study design. The broader study aims to gain insight in and formulate recommendations on how to improve palliative care for patients with a substance use disorder. Methods: A qualitative study with patients, proxies and healthcare professionals. Semi - structured interviews will be held with 10 – 15 patients who suffer from a severe substance use disorder. They are in a palliative care trajectory and either diagnosed with a chronic or life-threatening disease or, as a result of addictive behavior, a physical deterioration without the prospect of cure. Semi - structured interviews will also be held with 5 – 10 proxies. Healthcare professionals, volunteers and/or 'experts - by - experience' ( n = 24 – 40) will be participating in semi - structured group interviews. All (group) interviews will be thematically analyzed. Additionally, a strengths, weaknesses, opportunities and threats (SWOT) analysis will be applied to the group interview data with the aim to summarize and concretize the findings. Discussion: Everyone has a right to an optimal end-of-life phase of life and a dignified dying process. This study will provide valuable knowledge about palliative care for patients with a substance use disorder and explicitly bring to light the needs and problems of the patients and their proxies and healthcare professionals in a palliative care phase. [ABSTRACT FROM AUTHOR]