Search

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]

Community engagement (CE) has long been endorsed by policy makers and health practitioners. However, uncertainties remain about the workings and outcomes of CE. This study aims to provide in-depth insights into them. In a multiple case study, we investigated three participatory health promotion projects for families in vulnerable situations in the Netherlands. We adopted a realist approach combined with a theory of change (ToC) model. We then analysed the qualitative data for context–mechanism–outcome (CMO) configurations to refine this ToC. Results show that CE can strengthen social networks, empower families, and increase perceived health. However, specific contexts in combination with CE project approaches may or may not trigger positive responses. Participants may feel that they matter when asked to actively contribute to a project, which in turn can enhance their self-confidence. In another context, we found that families were overwhelmed by the responsibilities given to them in the project, leading to feelings of stress and withdrawal from the project. We present a list of CMO configurations and refine the ToC accordingly. Our main conclusion is that flexibility is key when CE is implemented in health promotion. Also, our findings question physical health outcomes as a realistic ambition for CE projects with groups in vulnerable situations. [ABSTRACT FROM AUTHOR]

Background: Patient Reported Outcomes Measures (PROMs) are being used increasingly to measure health problems in stroke clinical practice. However, the implementation of these PROMs in routine stroke care is still in its infancy. To understand the value of PROMs used in ischemic stroke care, we explored the patients' experience with PROMs and with the consultation at routine post-discharge follow-up after stroke. Methods: In this prospective mixed methods study, patients with ischemic stroke completed an evaluation questionnaire about the use of PROMs and about their consultation in two Dutch hospitals. Additionally, telephone interviews were held to gain in-depth information about their experience with PROMs. Results: In total, 63 patients completed the evaluation questionnaire of which 10 patients were also interviewed. Most patients (82.2–96.6%) found completing the PROMs to be feasible and relevant. Half the patients (49.2–51.6%) considered the PROMs useful for the consultation and most patients (87.3–96.8%) reported the consultation as a positive experience. Completing the PROMs provided 51.6% of the patients with insight into their stroke-related problems. Almost 75% of the patients found the PROMs useful in giving the healthcare provider greater insight, and 60% reported discussing the PROM results during the consultation. Interviewed patients reported the added value of PROMs, particularly when arranging further care, in gaining a broader insight into the problems, and in ensuring all important topics were discussed during the consultation. Conclusions: Completing PROMs appears to be feasible for patients with stroke attending post-discharge consultation; the vast majority of patients experienced added value for themselves or the healthcare provider. We recommend that healthcare providers discuss the PROM results with their patients to improve the value of PROMs for the patient. This could also improve the willingness to complete PROMs in the future. [ABSTRACT FROM AUTHOR]

Background: In the Netherlands, population-based cancer screening programmes (CSPs) are organized aiming at cervical, breast and colorectal cancer. For a CSP to be effective, high participation rates are essential; however, there is an alarming downward trend, including wide regional variation in screening uptake. General practitioner (GP) involvement can have a stimulating effect on screening participation. Current GP involvement is however, limited, varies between the programmes and has changed over time. Unexplored is what GPs think of their role(s) in the CSPs. The aim of this study was therefore to map the perceptions and beliefs of GPs regarding their current and future role in the Dutch CSPs. Methods: A mixed-methods sequential explanatory study was conducted in the Leiden/The Hague area of the Netherlands, between the end of 2021 and 2022. A questionnaire was developed and distributed among 110 GPs. The aggregated results obtained from the questionnaires served as starting points for conducting semi-structured interviews, with purposefully selected GPs. With this sequential approach we aimed to further enhance the understanding of the questionnaire data, and delved into the topics that emerged from the questionnaire responses. Results: In total, 46 GPs completed the online questionnaire (response rate 42%). Subsequent five semi-structured comprehensive interviews were conducted. GPs indicated that they frequently encounter the CSP in their daily practice and consider it important. They also emphasised it is important that GPs remain closely involved with the CSPs in the future. Nevertheless, GPs also repeatedly mentioned that they are not eager to take on more logistical/organizational tasks. They are however willing to empower CSPs in a positive manner. Conclusion: GPs were generally positive about the CSPs and their current role within these programmes. Nevertheless, several options have been proposed to improve the CSPs, especially to increase screening uptake for populations in a socioeconomically disadvantaged position. Since it is of utmost importance to screen those who are most at risk of developing the screening-specific tumours, efforts should be made to achieve this goal. [ABSTRACT FROM AUTHOR]

Background: While remote patient management (RPM) has the potential to assist in achieving treatment targets for cardiovascular risk factors in primary care, its effectiveness may vary among different patient subgroups. Panel management, which involves proactive care for specific patient risk groups, could offer a promising approach to tailor RPM to these groups. This study aims to (i) assess the perception of healthcare professionals and other stakeholders regarding the adoption and (ii) identify the barriers and facilitators for successfully implementing such a panel management approach. Methods: In total, nineteen semi-structured interviews and two focus groups were conducted in the Netherlands. Three authors reviewed the audited transcripts. The Consolidated Framework for Implementation Strategies (CFIR) domains were used for the thematic analysis. Results: A total of 24 participants (GPs, nurses, health insurers, project managers, and IT consultants) participated. Overall, a panel management approach to RPM in primary care was considered valuable by various stakeholders. Implementation barriers encompassed concerns about missing necessary risk factors for patient stratification, additional clinical and technical tasks for nurses, and reimbursement agreements. Facilitators included tailoring consultation frequency and early detection of at-risk patients, an implementation manager accountable for supervising project procedures and establishing agreements on assessing implementation metrics, and ambassador roles. Conclusion: Panel management could enhance proactive care and accurately identify which patients could benefit most from RPM to mitigate CVD risk. For successful implementation, we recommend having clear agreements on technical support, financial infrastructure and the criteria for measuring evaluation outcomes. [ABSTRACT FROM AUTHOR]

Background: End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals. Methods: Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital. Results: Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK). Conclusion: Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained. Trial registration: NCT04678310. Registered 21/12/2020. [ABSTRACT FROM AUTHOR]

Background: Integrated care is enhanced by integration on system, organizational, professional, and clinical levels including functional and normative integration. Many studies have been done on functional integration on these different levels, less studies focus on how normative integration takes place. In this study, we focus on the question: what differences in frames of refence must be addressed to establish consensus on appropriate care for People with Multiple Problems? Methods: A mixed-method Delphi study was carried out in which professionals and managers regularly involved in care for people with multiple problems (PWMPs) worked towards consensus on appropriate care delivery through the assessment of 15 vignettes representing real trajectories of PWMPs. Results: No consensus on appropriate care delivery was reached on any of the 15 vignettes. Five differences in perspective explained the dissensus: 1) an individual versus a systemic perspective on the client; 2) a focus on self-expressed needs of clients or professionally assessed (normative) needs; 3) client-directed or caregiver-directed care; 4) client as victim of circumstances or responsible for circumstances; 5) a focus on barriers or opportunities. Conclusions: In general, panelists agreed that care for PWMPs should be integrated. However, the further integrated care was to be operationalized in practice the greater the dissensus between panelists emerged. To understand how these differences in perspectives may be overcome to provide care for PWMPs normative integration needs to be studied during actual processes of care delivery. [ABSTRACT FROM AUTHOR]

Introduction: Shared decision making (SDM) requires an active role of both clinicians and patients. We aimed to conceptualise patient readiness for SDM about treatment, and to develop a patient questionnaire to assess readiness. Methods: We used the results of a scoping review and a qualitative study to inform the patient readiness construct. We conducted five additional rounds of data collection to finalise the construct definition and develop the Patient Readiness for SDM Questionnaire (ReadySDM) in an oncological setting: (1) longitudinal interviews with patients with cancer during and after a treatment decision‐making process; (2) a pilot study among experts, clinicians, and patients for feedback on the concept and items; (3) a field test among (former) patients with cancer to test item format and content validity, and to reduce the number of items; (4) cognitive interviews with people with low literacy to test the comprehensibility of the questionnaire; and (5) a field test among (former) patients who faced a cancer treatment decision in the last year, to test the content validity of the final version of the questionnaire. Results: A total of 251 people participated in the various rounds of data collection. We identified eight elements of patient readiness for SDM about treatment: (1) understanding of and attitude towards SDM; (2) information skills; (3) skills in communicating and claiming space; (4) self‐awareness; (5) consideration skills; (6) self‐efficacy; (7) emotional distress; and (8) experienced time. We developed the 20‐item ReadySDM to retrospectively measure these elements in an oncological setting. Conclusion: We conducted a thorough procedure to conceptualise patient readiness and to develop the ReadySDM. The questionnaire aims to provide novel insights into ways to enhance SDM in daily practice. Patient or Public Contribution: Multiple people with lived experience were involved in various phases of the study. They were asked for input on the study design, the conceptualisation of readiness, and the development of the questionnaire. [ABSTRACT FROM AUTHOR]

Previous work has shown that technology can facilitate the communication of emotions, social touch, and social presence through haptic devices, meaning devices that provide a haptic stimulation. However, for special user groups living in long-term care facilities, such as people with dementia, the applications of these haptic devices are not apparent. The aim of this study is to understand how haptic devices can be used in intramural care facilities in times of social isolation, focusing on haptic devices that utilize haptic sensation. Five haptic devices were tested at three care facilities. Insights from this study highlight the potential of haptic devices to enhance sensory, affective, and social experiences during video calling between residents and their relatives. Moreover, the importance of the tactile sensation and form factor of haptic devices in the care context is addressed, along with insights on how to create the appropriate atmosphere during video calling. [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]

Simple Summary: Sexuality remains an unspoken topic in the consulting room regarding testicular germ cell tumor (TGCT) patients in the adolescent and young adult (AYA) age. Little is known about the perspectives and concerns of these patients regarding sexuality. The PRICELESS-study explored these perspectives and concerns through individual interviews with 13 AYA patients treated for TGCT. Interviews revealed seven interacting and interconnected themes: desire to have children, rediscovering sexuality, insecurity about sexual performance, acceptance of physical change, loss of masculinity, burden on relationship, and openness in discussing sexuality. TGCT patients face multiple changes (physical, emotional, relational, and sexual), followed by a difficult period of acceptance, after which a new phase of rediscovering sexuality appears. Insights from this study can help healthcare professionals understand the underlying mechanisms and help to define topics for instrument development to support discussing sexuality. This study aimed to explore perspectives and concerns regarding sexuality among adolescents and young adults (AYAs) possibly experiencing late effects after testicular germ cell tumor (TGCT) treatment. A qualitative study was performed in which semi-structured interviews were held with thirteen AYAs from a center of expertise for TGCT in the Netherlands. Data were analyzed using Braun and Clark's thematic analysis method. Seven interacting and interconnected themes were found: desire to have children, rediscovering sexuality, insecurity about sexual performance, acceptance of physical change, loss of masculinity, burden on relationship, and openness in discussing sexuality. Concerns about the desire to have children seem to play a significant role. In conclusion, TGCT patients face multiple changes (physical, emotional, relational, and sexual), followed by a difficult period of acceptance, after which a new phase of rediscovering sexuality appeared. These findings can help to make healthcare professionals aware of the underlying mechanisms and concerns about sexuality. Furthermore, insights can help to develop sexuality-themed items for a broader monitoring tool to structurally assess the late effects to support discussing sexuality. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. Research Design and Objective: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. Findings: Thirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. Discussion and Implications: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. Patient or Public Contribution: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript. [ABSTRACT FROM AUTHOR]

At the beginning of 2020, the large and unforeseen inflow of COVID-19 patients had a deep impact on the healthcare operations of Dutch hospitals. From a patient flow logistics perspective, each hospital handled the situation largely in its own particular and improvised way. Nevertheless, some hospitals appeared to be more effective in their dealing with this sudden demand for extra care than others. This prompted a study into the factors which hindered and facilitated effective operations during this period. We provide an overview of actions and measures for organizing and managing the inflow, throughput and outflow of COVID-19 patients within Dutch hospitals from various types of departments in a large number of hospitals in The Netherlands, based on interviews with nine experts and twelve hospital managers. Ten actions or measures have been identified, which have been divided into the following three dimensions: Streamlining of the underlying in- and external processes, reducing unnecessary or undesirable inflow of patients and increasing or making more adequate use of the available (human) capacity. The main lessons learned are the importance of integral tuning in the care process, giving up habits and self-interest, good information provision and the middle manager as a linking pin. [ABSTRACT FROM AUTHOR]

Purpose: Achieving greater health and social care integration is a policy priority in many countries, but challenges remain. We focused on governance and accountability for integrated care and explored arrangements that shape more integrated delivery models or systems in Italy, the Netherlands and Scotland. We also examined how the COVID-19 pandemic affected existing governance arrangements. Design/methodology/approach: A case study approach involving document review and semi-structured interviews with 35 stakeholders in 10 study sites between February 2021 and April 2022. We used the Transparency, Accountability, Participation, Integrity and Capability (TAPIC) framework to guide our analytical enquiry. Findings: Study sites ranged from bottom-up voluntary agreements in the Netherlands to top-down mandated integration in Scotland. Interviews identified seven themes that were seen to have helped or hindered integration efforts locally. Participants described a disconnect between what national or regional governments aspire to achieve and their own efforts to implement this vision. This resulted in blurred, and sometimes contradictory, lines of accountability between the centre and local sites. Flexibility and time to allow for national policies to be adapted to local contexts, and engaged local leaders, were seen to be key to delivering the integration agenda. Health care, and in particular acute hospital care, was reported to dominate social care in terms of policies, resource allocation and national monitoring systems, thereby undermining better collaboration locally. The pandemic highlighted and exacerbated existing strengths and weaknesses but was not seen as a major disruptor to the overall vision for the health and social care system. Research limitations: We included a relatively small number of interviews per study site, limiting our ability to explore complexities within sites. Originality: This study highlights that governance is relatively neglected as a focus of attention in this context but addressing governance challenges is key for successful collaboration. [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: In the Netherlands, general practitioners (GPs) play a key role in provider-initiated HIV testing, but opportunities for timely diagnosis are regularly missed. We implemented an educational intervention to improve HIV testing by GPs from 2015 to 2020, and observed a 7% increase in testing in an evaluation using laboratory data. The objective for the current study was to gain a deeper understanding of whether and how practices and perceptions of GPs' HIV/sexually transmitted infection (STI) testing behaviour changed following the intervention. Methods: We performed a mixed-methods study using questionnaires and semi-structured interviews to assess self-reported changes in HIV/STI testing by participating GPs. Questionnaires were completed by participants at the end of the final educational sessions from 2017 through 2020, and participating GPs were interviewed from January through March 2020. Questionnaire data were analysed descriptively, and open question responses were categorised thematically. Interview data were analysed following thematic analysis methods. Results: In total, 101/103 participants completed questionnaires. Of 65 participants that were included in analyses on the self-reported effect of the programme, forty-seven (72%) reported it had changed their HIV/STI testing, including improved STI consultations, adherence to the STI consultation guideline, more proactive HIV testing, and more extragenital STI testing. Patients' risk factors, patients' requests and costs were most important in selecting STI tests ordered. Eight participants were interviewed and 15 themes on improved testing were identified, including improved HIV risk-assessment, more proactive testing for HIV/STI, more focus on HIV indicator conditions and extragenital STI testing, and tools to address HIV during consultations. However, several persistent barriers for optimal HIV/STI testing by GPs were identified, including HIV-related stigma and low perceived risk. Conclusions: Most GPs reported improved HIV/STI knowledge, attitude and testing, but there was a discrepancy between reported changes in HIV testing and observed increases using laboratory data. Our findings highlight challenges in implementation of effective interventions, and in their evaluation. Lessons learned from this intervention may inform follow-up initiatives to keep GPs actively engaged in HIV testing and care, on our way to zero new HIV infections. [ABSTRACT FROM AUTHOR]

Background: Very little attention has been given to the social accountability of conferences, either in action or in scholarship, in particular, of scientific conferences. Concerns that have been raised include: (1) Local communities and regions suffer from ecological pressure caused by conferences, (2) There is limited value to the local community, (3) International conferences take place at locations irrelevant to the topics discussed; hence there is no connection with locals, and (4) It has been the observation of the authors that <10% of participants may come from the region where the conference is organized, which makes it challenging to make a "positive societal impact" locally. We conducted a natural experiment investigating the interactions between academia, conference organizers, and community leaders. Methods: We utilized a case study approach to report on the outcomes of two 2022 annual international conferences that seek to improve community health. We used a mixed-methods approach of surveys and interviews. Thematic analysis was conducted to identify the key themes. Results: We obtained 358 responses from all six World Health Organization regions. Results from both conferences were split into two categories: the why and the how. A strong consensus among participants is that bi-directional learning between conference organizers and local communities leads to shared understanding and mutual goals. The data emphasize that including communities in academic conferences helps us progress forward from intentions toward demonstrating accountability and reporting impact. Discussion: A diversity of perspectives is needed to advance socially accountable health system transformation. Five best practices from conference participants are laid out as a framework to assist in the change: (1) Build trust, (2) provide funding for community member participation, (3) appreciation of local community knowledge, (4) involve the local community in the planning stages, and (5) make the local community part of the conference and learning. [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]

. The aim of the paper is to investigate the effect of measurement error on low pay transition probabilities. Our approach combines the virtues of panel regression and latent class models, though it does not require the use of validation or reinterview data. Using British, German and Dutch panel data, we show that the true estimated low pay transition probability is much lower that what previous research has found. This implies that almost half of the observed transitions can be attributed to measurement error. The highest low pay transition probabilities are found in Germany and the lowest in the Netherlands. When applying this correction for measurement error in a multivariate model of low pay transitions, the results indicate that measurement error attenuates considerably the effects of the main covariates, such as training, job change, change in the type of employment contract and shift from part-time to full-time employment. [ABSTRACT FROM AUTHOR]

In the Netherlands, there is a research tradition that measures fraud against regulations by interviewing eligible individuals using a survey. In these studies the sensitive questions about fraud are posed by using a randomized response method. The paper describes the results of a Dutch study into the consequences of replacing home interviews by trained interviewers with Internet-delivered interviews in a survey on fraud in the area of disability benefits. Both surveys used computer-assisted self-interviews with randomized response questions. This study has three goals: first to present the research tradition that makes use of randomized response, second to compare the results of home interviews and the Internet survey and finally to introduce an adapted weighted logistic regression method to test the relationship between the probability of fraud and explanatory variables. The results show that there are no systematic differences between modes of interview, either for estimates of the prevalence of fraud or for the identification of associated variables. These outcomes result in the conclusion that the Internet survey is a useful and cost-effective instrument for measuring fraud in a population, and that it is unlikely that replacing home interviews with the Internet survey will result in a significant break with tradition. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to gain insight into nurses' perspectives on the shift‐to‐shift handover in relation to providing Person‐centred care (PCC) in nursing homes. Background: PCC is perceived as the gold standard for nursing home care. To preserve the continuity of PCC, an adequate handover during the nurses' shift change is essential. There is, however, little empirical evidence for what constitutes best shift‐to‐shift nursing handover practices in nursing homes. Design: An exploratory qualitative descriptive study. Methods: Nine nurses were selected purposively and through snowball sampling from five Dutch nursing homes. Semi‐structured face‐to‐face and telephone interviews were conducted. Analysis relied on Braun and Clarke's thematic analysis. Results: Four main themes were identified related to enabling PCC informed handovers: (1) knowing the resident to be enable to provide PCC was key, (2) the actual handover, (3) additional ways of information transfer and (4) nurses' knowledge of the resident prior to start shift. Conclusion: The shift‐to‐shift handover is one way that nurses become informed about residents. Knowing the resident is essential to enable PCC. The fundamental underlying question is to what extent nurses have to know the resident in order to enable PCC. Once that level of detail has been established, in‐depth research is needed to determine the best method for conveying this information to all nurses. Only then can we start to rethink the role of the shift‐to‐shift handover in conveying PCC‐driven information. No Patient or Public Contribution. [ABSTRACT FROM AUTHOR]

Background: To address issues related to suboptimal insight in outcomes, fragmentation, and increasing costs, stakeholders are experimenting with value-based payment (VBP) models, aiming to facilitate high-value integrated care. However, insight in how, why and under what circumstances such models can be successful is limited. Drawing upon realist evaluation principles, this study identifies context factors and associated mechanisms influencing the introduction of VBP in stroke care. Methods: Existing knowledge on context-mechanism relations impacting the introduction of VBP programs (in real-world settings) was summarized from literature. These relations were then tested, refined, and expanded based on a case study comprising interviews with representatives from organizations involved in the introduction of a VBP model for integrated stroke care in Rotterdam, the Netherlands. Results: Facilitating factors were pre-existing trust-based relations, shared dissatisfaction with the status quo, regulatory compatibility and simplicity of the payment contract, gradual introduction of down-side risk for providers, and involvement of a trusted third party for data management. Yet to be addressed barriers included friction between short- and long-term goals within and among organizations, unwillingness to forgo professional and organizational autonomy, discontinuity in resources, and limited access to real-time data for improving care delivery processes. Conclusions: Successful payment and delivery system reform require long-term commitment from all stakeholders stretching beyond the mere introduction of new models. Careful consideration of creating the 'right' contextual circumstances remains crucially important, which includes willingness among all involved providers to bear shared financial and clinical responsibility for the entire care chain, regardless of where care is provided. [ABSTRACT FROM AUTHOR]

Aims and objectives: This study aimed to gain insight into the experiences and needs of certified nursing assistants regarding their coaching by bachelor‐educated registered nurses in nursing homes. Background: Certified nursing assistants are key in providing day‐to‐day nursing home care. They are, however, not trained to meet the increasingly complex needs of nursing home residents. For certified nursing assistants to respond to high‐complexity care, coaching by bachelor‐educated registered nurses may be appropriate. Yet, knowledge of how bachelor‐educated registered nurses can provide valid coaching is lacking. Design: An explorative qualitative design was adopted. Methods: Certified nursing assistants (n = 13) were purposively selected from 10 Dutch nursing homes. Semi‐structured interviews were conducted in 2020 and 2021, and thematic analysis was applied. Results: Two main themes emerged: connecting with certified nursing assistants, and the coaching activities themselves. Certified nursing assistants deemed several aspects important for bachelor‐educated registered nurses to connect with them: respecting the autonomy of certified nursing assistants, being visible and reachable, adapting communication, clarifying own job description, and participating in care. Certified nursing assistants perceived coaching by bachelor‐educated registered nurses as valuable when they fulfil their needs through activities such as empowering, teaching, and mediating between management and certified nursing assistants. Conclusions: Valid coaching of certified nursing assistants appears possible and requires specific competencies of bachelor‐educated registered nurses. Relevance to clinical practice: Coaching certified nursing assistants is one way of addressing complex care needs in nursing homes, and coaching can contribute to both professional and team development. As coaching requires specific competencies of bachelor‐educated registered nurses, nursing education profiles should be enriched with this most important role. Management can facilitate coaching by providing bachelor‐educated registered nurses with a clear job description. Patient or public contribution: Experts on coaching in nursing home settings informed the topic list. Furthermore, member check was performed. [ABSTRACT FROM AUTHOR]

Background In Europe, more than 15 million people live with heart failure (HF). It imposes an enormous social, organizational and economic burden. As a reaction to impending impact on healthcare provision, different country-specific structures for HF-care have been established. The aim of this report is to provide an overview and compare the HF-care approaches of Germany, Ireland, the Netherlands and the UK, and to open the possibility of learning from each other's experience. Methods A mixed methods approach was implemented that included a literature analysis, interviews and questionnaires with HF-patients and caregivers, and expert interviews with representatives from healthcare, health service research and medical informatics. Results The models of HF-care in all countries analyzed are based on the European Society of Cardiology guidelines for diagnosis and treatment of HF. Even though the HF-models differed in design and implementation in practice, key challenges were similar: (i) unequal distribution of care between urban and rural areas, (ii) long waiting times, (iii) unequal access to and provision of healthcare services, (iv) information and communication gaps and (v) inadequate implementation and financing of digital applications. Conclusion Although promising approaches exist to structure and improve HF-care, across the four countries, implementation was reluctant to embrace novel methods. A lack of financial resources and insufficient digitalization making it difficult to adopt new concepts. Integration of HF-nurses seems to be an effective way of improving current models of HF-care. Digital solutions offer further opportunities to overcome communication and coordination gaps and to strengthen self-management skills. [ABSTRACT FROM AUTHOR]

Introduction: Understanding participants' concerns and information needs regarding broadened consent is crucial to ensure transparency and participant autonomy. Our study qualitatively examined these issues in women participating in the Personalized RISk‐based MAmmascreening study (PRISMA). The original PRISMA informed consent was project‐specific (i.e., breast cancer research), limiting the scope of secondary research. We explored participants' needs for broadened consent to preserve informed decision‐making while maximising the potential re‐use of data. Methods: Focus groups (FGs) were performed following a semistructured discussion guide. Two independent researchers analysed the data thematically using an inductive approach. Findings: Twenty‐three asymptomatic women and 13 women diagnosed with breast cancer were randomly divided into six FGs. Four superordinate themes were identified: (1) Normalization, (2) Attitude towards the pharmaceutical industry, (3) Privacy and (4) Knowledge. Our participants viewed data sharing as an important conduit for advancing medical science. Perceived integrity was more often attributed to noncommercial than commercial parties, with a marked mistrust towards the pharmaceutical industry. Most requested information needs related to data protection. Participants' ideal consent process would confer a range of options; for example, they would be able to choose with whom data can be shared, whether data will be de‐identified or anonymous, the expiration date of their consent and how, if requested, general and personal study results would be disclosed. Conclusion: Our participants expressed clear information needs and a strong desire to be actively engaged in future data sharing decisions. Given that many researchers collaborate with commercial parties, building public confidence in these institutions would be beneficial. Illustrative examples addressing privacy concerns and clarifying difficult terms would aid consent decision‐making. Although our participants displayed great altruism in sharing their data and accepted that broad consent would ultimately facilitate future research, broad consent did not reflect their ideal situation. Dynamic consent may be an option but warrants further feasibility research. Patient and Public Contribution: Women were recruited from the general breast cancer screening population. Their perceptions and information needs, as reported in this study, will not only inform broadened consent for PRISMA but ideally guide other consent templates and decisions regarding consent processes. [ABSTRACT FROM AUTHOR]

Despite the many benefits of club-organized sports participation for children, sports participation is lower among children from low-income families than among those from middle- or high-income families. Social safety experienced by parents from low-income families is an important facilitator for parents to request financial support for their children's sports participation. Therefore, the first aim of this study was to better understand parental social (un)safety in the context of acquiring financial support for children's sports participation and how to create a safe social environment for low-income parents to request and receive this financial support. The second aim was to describe the co-creation process, which was organized to contribute to social safety solutions. To reach these goals, we applied a participatory action research method in the form of four co-creation sessions with professionals and an expert-by-experience, as well as a group interview with parents from low-income families. The data analysis included a thematic analysis of the qualitative data. The results showed that from the perspective of parents, social safety encompassed various aspects such as understandable information, procedures based on trust, and efficient referral processes. Sport clubs were identified as the primary source of information for parents. Regarding the co-creation process, the study found that stakeholders tended to overestimate parental social safety levels. Although the stakeholders enjoyed and learned from the sessions, differences in prior knowledge and a lack of a shared perspective on the purpose of the sessions made it challenging to collaboratively create solutions. The study's recommendations include strategies for increasing parental social safety and facilitating more effective co-creation processes. The findings of this study can be used to inform the development of interventions that contribute to a social environment in which parents from low-income families feel safe to request and receive financial support for their children's sports participation. [ABSTRACT FROM AUTHOR]

Background: Despite the fact that for over ten years, Lithuanian consumers have been able to report adverse drug reactions (ADR) directly to the competent authority, reporting rates remain low. A comprehensive understanding of consumer perceptions and experiences regarding ADRs is needed to ascertain further factors impacting their engagement in ADR reporting. This study aimed to assess consumer knowledge of, attitude toward, and practice of reporting ADRs. Methods: A questionnaire-guided cross-sectional survey among 404 consumers between October 2021 and June 2022 was conducted. The semi-structured questionnaire comprised open-ended and closed-ended questions to explore the sociodemographic characteristics and general knowledge of ADRs and pharmacovigilance. Other question items evaluated attitudes toward ADR reporting and ADR reporting practice. The data were summarised using descriptive statistics, while the chi-square test was used to assess categorical variables at p < 0.05. The overall percent score in the knowledge and attitude domains was divided into groups of "poor", "moderate", and "good" knowledge, as well as "positive" and "negative" attitudes. Results: While having a generally poor understanding, this study demonstrates that Lithuanian consumers have a favourable attitude toward pharmacovigilance, particularly regarding issues involving the requirement for reporting. The data also revealed the justifications for reporting and not reporting ADRs. Conclusions: The current study provided the first understanding of consumer awareness and ADR reporting intentions, which can help to develop educational campaigns and interventions addressing pharmacovigilance and ADR reporting. [ABSTRACT FROM AUTHOR]

Aim. To explore and describe the factors that influence the job satisfaction of nurses working in the intensive care unit (ICU). Background. High turnover and dropout rates of nurses currently put pressure on the accessibility and quality of ICU care. Job satisfaction is an important predictor for turnover. However, there is little knowledge about the factors that enhance or frustrate the job satisfaction of ICU nurses. Methods. A qualitative descriptive study was conducted from March to July 2022. Semistructured interviews were held with 23 registered nurses who were purposively sampled from the ICU in four hospitals in the Netherlands. Interview transcripts were analyzed by using a thematic content analysis approach. Results. Six themes emerged: (1) being part of a solid team; (2) professional autonomy; (3) competence development; (4) appreciation of work by others; (5) work content; and (6) human resource management. Interviewees described the importance of being part of a team, having professional autonomy and opportunities to develop and remain challenged as a professional. In practice, these needs are often not met. Interviewees expressed their own role in meeting these needs by taking charge in situations, being eager to learn, and actively looking for ways to keep work attractive. Recognition and appreciation for their work are important catalysts for staying motivated. Monotonous work, poor leadership, and bureaucracy reduced their job satisfaction. Conclusion. Our findings provide deeper insight into a range of factors that influence the job satisfaction of ICU nurses and may also apply to nurses in other settings. Practical recommendations are given for keeping the nursing profession attractive for the current and future generation. Implications for Nursing Management. Findings emphasize the importance of optimizing nurses' work conditions by investing in their social embeddedness, professional autonomy, opportunities for competence development, and appreciation of work. [ABSTRACT FROM AUTHOR]

Introduction: Client-accessible interdisciplinary health records potentially contribute to integrated care by facilitating collaboration and enhancing clients’ involvement in care. To achieve this, three Dutch organizations providing ‘care for youth’ developed a fully client-accessible electronic patient record (EPR-Youth). Objective: To evaluate the implementation of EPR-Youth and to determine barriers and facilitators. Methods: A mixed methods design combined system data, process observations, questionnaires and focus group interviews. Target groups were parents, adolescents, professionals using EPR-Youth, and implementation stakeholders. Findings: Client-portal acceptability was high among all clients. Client-portal adoption rate was high and differed between age groups and educational levels. Professionals’ doubts about acceptability, appropriateness and fidelity were partly due to lack of system knowledge. Implementation barriers were the complexity of co-creation, lack of clear leadership, and concerns about legal issues. Facilitators were clarifying vision and legal context, setting deadlines, and a pioneering spirit. Conclusion: The early implementation of EPR-Youth, the first Dutch client-accessible interdisciplinary electronic health record in ‘care for youth’ was successful. To enhance adoption among clients, group-specific barriers for portal-use should be determined. Professionals need additional training. Further research is needed to gain insight into client-portal access barriers. To benefit more from co-creation, an organizational change towards situational leadership is necessary. [ABSTRACT FROM AUTHOR]

Background: COVID-19 has greatly affected the delivery of all health care services globally. Antenatal care is one area of care that has been impacted, despite the fact that attending antenatal check-ups is essential for pregnant women and cannot be postponed. Little is known about how exactly ANC provision has changed in the Netherlands, or how the changes have impacted midwives and gynaecologists providing those services. Methods: This study used a qualitative research design to investigate changes in individual and national practice following the onset of the COVID-19 pandemic. The study involved a document analysis of protocols and guidelines for ANC provision to evaluate how those changed following the onset of the COVID-19 pandemic and semi-structured interviews with ANC care providers (i.e., gynaecologists and midwives). Results: Guidance was issued by multiple organizations, during the pandemic, on how to approach the risk of infection in pregnant women, recommending several changes to ANC to protect both pregnant women and ANC providers. Both midwives and gynaecologists reported changes in their practice. With less face-to-face consultations happening, digital technologies became critical in the care of pregnant women. Shorter and fewer visits were reported, with midwifery practices adjusting their guidelines further than hospitals. Challenges, with high workloads and lack of personal protective equipment were discussed. Conclusions: The COVID-19 pandemic has had an immense impact on the health care system. This impact has had both negative and positive effects on the provision of ANC in the Netherlands. It is important to learn from the current COVID-19 pandemic and adapt ANC, as well as health care systems as a whole, to be better prepared for future health crises and ensure continuous provision of good quality care. Plain Language summary: COVID-19 has affected the delivery of healthcare services globally. Antenatal care is one of the healthcare services that has been impacted on a global scale. Little is known about how antenatal care provision has changed in the Netherlands during the pandemic period. Our project focuses on examining the effects of COVID-19 on existing antenatal care protocols, as well as the impacts on antenatal care providers, such as midwives and gynaecologists. This knowledge can be beneficial in adapting antenatal care provision in times of health emergencies, to be better prepared and more resilient. This research uses a qualitative approach to investigate changes in practice following COVID-19 pandemic. It involves 20 antenatal care providers, working in the Netherlands, which took part in semi-structured interviews, and 9 national protocols and guidelines which were analysed. This study indicates that antenatal care changed at different levels in the Netherlands. Many changes show that antenatal care is an essential service, which should not be cut back, but it should be implemented, to be prepared for a future health emergency. [ABSTRACT FROM AUTHOR]

The majority of older adults with dementia living in a nursing home exhibit behavioral and psychological symptoms of dementia (BPSD). This behavior is difficult for residents to cope with. Early recognition of BPSD is important in order to implement personalized integrated treatment, and nursing staff are in the unique position to consistently observe residents' behavior. The aim of this study was to explore nursing staff's experiences observing BPSD of nursing home residents with dementia. A generic qualitative design was chosen. Twelve semi-structured interviews were conducted with nursing staff members until data saturation. Data were analyzed using inductive thematic analysis. Four themes were identified: "group harmony" observations from a group perspective, focused on the disturbance of group harmony; an "intuitive approach", which involves observing unconsciously and without a set method; "reactive intervention", which refers to immediate removal of observed triggers without exploring the causes of behaviors; and "sharing information", which is delayed sharing of observed behavior with other disciplines. The current way in which nursing staff observe BPSD and share observations within the multidisciplinary team explain several existing barriers to achieving high treatment fidelity for BPSD with personalized integrated treatment. Therefore, nursing staff must be educated to structure their daily observations methodologically and interprofessional collaboration improved to share their information in a timely manner. [ABSTRACT FROM AUTHOR]

Introduction: Integrated care can create several advantages, such as better quality of care and better outcomes. These advantages apply especially to clients with multiple problems (CWMPs) who have multiple, interconnected needs that span health and social issues and require different health care (e.g., mental health care or addiction care), social care (e.g., social benefits) and welfare services at the same time. Integrated care is most often studied as a phenomenon taking place at the system, organizational, professional and clinical levels. Therefore, in many studies, clients seem to be implicitly conceptualized as passive recipients of care. Less research has been conducted on how clients and (in)formal caretakers coproduce integrated care. Methods: We performed a longitudinal study to investigate how CWPMs and (in)formal caretakers coproduce integrated care. Data were collected among CWMPs and their (in)formal caretakers in Rotterdam, the Netherlands. CWMPs' care trajectories were followed for 1–1.5 years. CWMPs were interviewed three times at an interval of 6 months (T0, T1, T2). Informal caretakers were interviewed three times (T0, T1, T2), and formal caretakers of 16 clients were interviewed twice (T1, T2). Data in the municipal record systems about participating CWMPs were also included. Results: Our study shows that the CWMPs' multidimensional needs, which should function as the organizing principle of integrated care, are rarely completely assessed at the start (first 6 weeks) of CWMPs' care trajectories. Important drivers behind this shortcoming are the urgent problems CWMPs enter the support trajectory with, their lack of trust in 'the government' and the complexity of their situations. We subsequently found two distinct types of cases. The highest level of integrated care is achieved when formal caretakers initiate an iterative process in which the CWMP's multidimensional needs are constantly further mapped out and interventions are attuned to this new information. Conclusions: Our study indicates that integrated care is the joint product of formal caretakers and CWMPs. Integrated care however does not come naturally when CWMPs are 'put at the center'. Professionals need to play a leading role in engaging CWMPs to coproduce integrated care. Patient Contribution: CWMPs and their (in)formal caretakers participated in this study via interviews and contributed with their experiences of the process. [ABSTRACT FROM AUTHOR]

Introduction: In 24/7 disability care facilities, patient‐reported experience measures (PREMs) are important to help healthcare professionals understand what matters to care users and to improve the quality of care. However, the successful implementation of a PREM is complex. In a Dutch disability care organization, stakeholders cocreated tailored implementation strategies aimed at improving the use and integration of a qualitative PREM. This study gives insights into the uptake and experiences with these cocreated implementation strategies and the perceived impact of the set of strategies. Methods: We performed a prospective process evaluation between February 2020 and February 2021. We collected data in three disability care facilities from 35 care users, 11 professionals, 3 facility managers and 4 organization representatives. Data collection included observations during kick‐offs and learning goal meetings and several attendance checklists. We collected 133 questionnaires (Time 0 and Time 1). We conducted 35 individual semistructured interviews and an online focus group interview. Quantitative data were analysed using descriptive statistics and qualitative data using directed content analysis. Results: The exposure to and adoption of strategies was between 76% and 100%. Participants were positive about tailoring the strategies to each facility. Implementation was hindered by challenges in care users' communication and COVID‐19. The perceived impact referred to an improved understanding of the goal and added value of the PREM and better preparation and execution of the PREM. The impact of the set of strategies was mainly experienced on the micro level. Conclusion: The uptake of the cocreated implementation strategies was acceptable. The participants valued the tailored approach, which enabled them to focus on facility‐specific learning goals. Stakeholder engagement and co‐created strategies may have strengthened the adoption of and experiences with the implementation. Patient or Public Contribution: In this article, we present the process evaluation of implementation strategies for the integrated use of a PREM in disability care. A development group consisting of communication vulnerable care users, trainers and professionals developed the implementation strategies. The disability care organization was responsible for the planning and organization of the implementation process. During the process evaluation the end users, trainers, professionals and managers tailored the implementation strategies to their own settings and needs. Researchers observed this implementation process and interviewed the stakeholders about their experiences and the perceived impact. [ABSTRACT FROM AUTHOR]

Transgender and non-binary (TNB) people are at increased risk of adverse sexual and reproductive health (SRH) outcomes compared to cisgender people. With this qualitative study, we investigated the experiences of TNB people with access to primary SRH care in the Netherlands. We conducted semi-structured, explorative interviews with fourteen TNB individuals. Data were analysed using thematic analysis. We identified three themes: 'navigating cisgender assumptions', 'depending on your healthcare provider' and 'access requires labour'. In primary SRH care, respondents felt that healthcare providers made incorrect assumptions about their care needs which required respondents to actively disclose their gender identity or medical history. However, some respondents felt disclosure also exposed them to clinical bias, or reduced them to a medical category 'transgender' that their healthcare providers perceived to require specialised knowledge. In this context, respondents felt the onus was on them to ensure their SRH care needs were met. Using the concept of trans erasure, we highlight how TNB people are put at risk of adverse SRH outcomes. Creating equitable care access requires not only that providers are educated on TNB health needs and their own cisnormativity, but also an ongoing, critical reflection on the use of gender- and sex-based categories in medicine. [ABSTRACT FROM AUTHOR]

Background: Tooth brushing with fluoride toothpaste is a key recommendation in evidence-based guidelines for caries prevention. Parents generally have sufficient knowledge to practice tooth brushing for their child, yet many experience barriers to actually implement the behaviour. Common barriers are associated with difficult child behaviour, stress, poor family organisation and management of routines. These underlying determinants of tooth brushing behaviour should be addressed in caries-preventive interventions. The 'Uitblinkers' intervention is a semi-structured interview method developed for oral healthcare professionals (OHPs), with the aim to improve the practice of twice daily tooth brushing in children. The interview method focusses on 1) identifying parents' barriers to tooth brushing, and 2) promoting parenting strategies (related to tooth brushing) to tackle the identified barriers. The intervention applies principles from learning theory, including stimulus control, operant conditioning and authoritative parenting. This paper describes a study protocol to evaluate the effect of the intervention. Methods: This non-randomised cluster-controlled trial will be conducted in 40 general dental practices in The Netherlands. Intervention practices will implement the intervention in addition to care as usual, while control practices will only provide care as usual. From each dental practice, a random sample of 3 to 4-year-old children will be recruited. The intervention consists of three sessions between an OHP and parent, in which parenting strategies for identified barriers are discussed. The primary study outcome is children's dental caries experience after 24 months. Secondary outcomes include parents' self-efficacy in brushing their children's teeth, tooth brushing frequency in children and children's dental plaque scores. Differences in outcomes between the intervention and control group will be assessed using logistic and negative binomial regression. The feasibility of the intervention will be assessed through process evaluation. Discussion: Findings of this study will ascertain whether promoting parenting strategies is a successful method to improve tooth brushing in children and to prevent childhood dental caries in a clinical dental setting. Trial registration: This trial is registered with the Netherlands National Trial Register (registration date: 7 September 2018; trial registration number: NTR7469). [ABSTRACT FROM AUTHOR]

Background: Palliative care provision for persons experiencing homelessness is often poor. A threefold consultation service intervention was expected to increase knowledge of palliative care and multidisciplinary collaboration, and improve palliative care for this population. This intervention comprised: 1) consultation of social service professionals by palliative care specialists and vice versa; 2) multidisciplinary meetings with these professionals; and 3) training and education of these professionals. We aimed to evaluate the implementation process and its barriers and facilitators of this service implemented within social services and healthcare organizations in three Dutch regions. Methods: A process evaluation using structured questionnaires among consultants, semi-structured individual and group interviews among professionals involved, and (research) diaries. Qualitative data were analysed using thematic analysis. The process evaluation was structured using the Reach, Adoption, Implementation and Maintenance dimensions of the RE-AIM framework. Results: All three regions adopted all three activities of the intervention, with differences between the three regions in the start, timing and frequency. During the 21-month implementation period there were 34 consultations, 22 multidisciplinary meetings and 9 training sessions. The professionals reached were mainly social service professionals. Facilitators for adoption of the service were a perceived need for improving palliative care provision and previous acquaintance with other professionals involved, while professionals' limited skills in recognizing, discussing and prioritizing palliative care hindered adoption. Implementation was facilitated by a consultant's expertise in advising professionals and working with persons experiencing homelessness, and hindered by COVID-19 circumstances, staff shortages and lack of knowledge of palliative care in social service facilities. Embedding the service in regular, properly funded meetings was expected to facilitate maintenance, while the limited number of persons involved in this small-scale service was expected to be an obstacle. Conclusions: A threefold intervention aimed at improving palliative care for persons experiencing homelessness is evaluated as being most usable when tailored to specific regions, with bedside and telephone consultations and a combination of palliative care consultants and teams of social service professionals. It is recommended to further implement this region-tailored intervention with palliative care consultants in the lead, and to raise awareness and to remove fear of palliative care provision. [ABSTRACT FROM AUTHOR]

Background (Instrumental) activities of daily living ((I)ADL) questionnaires are often used as a measure of functioning for different purposes. Depending on the purpose, a measurement of functioning that includes subjective patient perspectives can be relevant. However, it is unclear to what extent (I)ADL instruments capture self-perceived functioning. Objective Explore what functioning means to older persons after a hip fracture and assess the extent to which (I)ADL instruments align with self-perceived functioning. Design Qualitative interview study with framework analysis. Setting Prospective cohort study on recovery after a hip fracture among older persons in a hospital in a large city in the west of the Netherlands. Subjects Eighteen home-dwelling older persons (≥70 years) who had a hip fracture 6–12 months ago. Methods Telephone interviews about functioning before and after the hip fracture were coded and analysed using the framework method. Results The activities mentioned by participants to be part of their self-perceived functioning could be split into activities necessary to maintain the desired level of independence, and more personal activities that were of value to participants. Both the 'independence activities' and the 'valued activities' mentioned went beyond the activities included in (I)ADL questionnaires. Due to various coping strategies, limitations in activities that are measured in the (I)ADL questionnaires did not necessarily lead to worse self-perceived functioning. Conclusion Self-perceived functioning differs from functioning measured with (I)ADL questionnaires in the items included and the weighing of limitations in activities. Thus, (I)ADL instruments alone are not enough to measure functioning from the perspective of the older person. [ABSTRACT FROM AUTHOR]

Social, contextual, and technological changes affected the educational context for students who are deaf or hard of hearing (D/HH) in higher education in many countries. Although, several barriers to academic success already have been identified, the perspectives of D/HH-students on inclusion, educational facilities, and support are important to overcome them. This interview-based qualitative study describes the perspectives of 32 D/HH-students in mainstream higher education in The Netherlands. Within the dichotomy of environmental factors and personal factors, data have been analysed. Students experienced social acceptance by others with typical hearing, although participating in social events sometimes caused feelings of loneliness or separation. Access arrangements and adjustments in educational programs were necessary to cope with the experienced fatigue, participate during lectures or increase speech intelligibility of the lecturer. Especially poor classroom acoustics and limited intelligibility of speech hampered students during lectures. Students expressed their dissatisfaction about the way access arrangements and adjustments were arranged, yet at the same time, they do not know what the requested help should look like. A co-created policy in which D/HH-students, student support officers, and institutional policy makers are involved, would support D/HH-students in mainstream higher education in The Netherlands and abroad in their needs. [ABSTRACT FROM AUTHOR]