The influence of health literacy, anxiety and education on shared decision making and decisional conflict in older adults, and the mediating role of patient participation: A video observational study.

OBJECTIVE: To explore the relationship between personal characteristics of older adults with multiple chronic conditions (MCCs) and perceived shared decision making (SDM) resp. decisional conflict. METHODS: In a video-observational study (N = 213) data were collected on personal characteristics. The main outcomes were perceived level of SDM and decisional conflict. The mediating variable was participation in the SDM process. A twostep mixed effect multilinear regression and a mediation analysis were performed to analyze the data. RESULTS: The mean age of the patients was 77.3 years and 56.3% were female. Health literacy (ß.01, p < .001) was significantly associated with participation in the SDM process. Education (ß = -2.43, p = .05) and anxiety (ß = -.26, p = .058) had a marginally significant direct effect on the patients' perceived level of SDM. Education (ß = 12.12, p = .002), health literacy (ß = -.70, p = .005) and anxiety (ß = 1.19, p = .004) had a significant direct effect on decisional conflict. The effect of health literacy on decisional conflict was mediated by participation in SDM. CONCLUSION: Health literacy, anxiety and education are associated with decisional conflict. Participation in SDM during consultations plays a mediating role in the relationship between health literacy and decisional conflict. PRACTICE IMPLICATIONS: Tailoring SDM communication to health literacy levels is important for high quality SDM.

Accountability in healthcare in the Netherlands: A scoping review.

For better serving people's complex needs the subsequent movement to person-centred integrated care, requires inter-organisational cooperation and service provision by domain-overarching networks and alliances. In the development to these networks, it is relevant to explore which accountability approaches are appropriate for local inter-organisational healthcare governance. Therefore, in a scoping review we studied the current state of knowledge and practice of accountability in healthcare in the Netherlands. We found that two of the included 41 studies show characteristics of accountability towards healthcare with characteristics of integration care components, such as integration of services with accompanying accountability arrangements and development of networked accountability. The first studies are found in the literature which report on accountability in integrated care. With this we add to the international discussion about accountability as an aspect of integrated care governance, by providing insight into the current state of art of accountability in Dutch healthcare.

Effects of a shared decision making intervention for older adults with multiple chronic conditions: the DICO study.

BACKGROUND: To evaluate the effects of a shared decision making (SDM) intervention for older adults with multiple chronic conditions (MCCs). METHODS: A pragmatic trial evaluated the effects of the SDMMCC intervention, existing of SDM training for nine geriatricians in two hospitals and a preparatory tool for patients. A prospective pre-intervention post-intervention multi-center clinical study was conducted in which an usual care group of older patients with MCC and their informal caregivers was included before the implementation of the intervention and a new cohort of patients and informal caregivers after the implementation of the intervention. SDM was observed using the OPTIONMCC during video-recorded consultations. Patient- and caregivers reported outcomes regarding their role in SDM, involvement, perceived SDM and decisional conflict were measured. The differences between groups regarding the level of observed SDM (OPTIONMCC) were analyzed with a mixed model analysis. Dichotomous patient-reported outcomes were analyzed with a logistic mixed model. RESULTS: From two outpatient geriatric clinics 216 patients with MCCs participated. The mean age was 77.3 years, and 56.3% of patients were female. No significant difference was found in the overall level of SDM as measured with the OPTIONMCC or in patient-reported outcomes. However, at item level the items discussing 'goals', 'options', and 'decision making' significantly improved after the intervention. The items discussing 'partnership' and 'evaluating the decision-making process' showed a significant decrease. Fifty-two percent of the patients completed the preparatory tool, but the results were only discussed in 12% of the consultations. CONCLUSION: This study provides scope for improvement of SDM in geriatrics. Engaging older adults with MCCs and informal caregivers in the decision making process should be an essential part of SDM training for geriatricians, beyond the SDM steps of explaining options, benefits and harms. More attention should be paid to the integration of preparatory work in the consultation.

Toward Responsible Artificial Intelligence in Long-Term Care: A Scoping Review on Practical Approaches.

BACKGROUND AND OBJECTIVES: Artificial intelligence (AI) is widely positioned to become a key element of intelligent technologies used in the long-term care (LTC) for older adults. The increasing relevance and adoption of AI has encouraged debate over the societal and ethical implications of introducing and scaling AI. This scoping review investigates how the design and implementation of AI technologies in LTC is addressed responsibly: so-called responsible innovation (RI). RESEARCH DESIGN AND METHODS: We conducted a systematic literature search in 5 electronic databases using concepts related to LTC, AI, and RI. We then performed a descriptive and thematic analysis to map the key concepts, types of evidence, and gaps in the literature. RESULTS: After reviewing 3,339 papers, 25 papers were identified that met our inclusion criteria. From this literature, we extracted 3 overarching themes: user-oriented AI innovation; framing AI as a solution to RI issues; and context-sensitivity. Our results provide an overview of measures taken and recommendations provided to address responsible AI innovation in LTC. DISCUSSION AND IMPLICATIONS: The review underlines the importance of the context of use when addressing responsible AI innovation in LTC. However, limited empirical evidence actually details how responsible AI innovation is addressed in context. Therefore, we recommend expanding empirical studies on RI at the level of specific AI technologies and their local contexts of use. Also, we call for more specific frameworks for responsible AI innovation in LTC to flexibly guide researchers and innovators. Future frameworks should clearly distinguish between RI processes and outcomes.

Decision-Making Dilemmas within Integrated Care Service Networks: A Systematic Literature Review.

Introduction: The diverse nature of people's care needs requires collaboration between different organisations and sectors. One way of achieving such collaboration is through integrated care service networks. Decision-making is considered an important aspect of network governance and key to achieve further integration of care services. As integrated care scholars only implicitly seem to touch upon the issue of decision-making, we aimed to identify multiple decision-making dilemmas. Theory and Methods: A systematic literature review was conducted of eighteen empirical studies in which decision-making dilemmas in integrated care service networks were inductively identified. To frame and understand these dilemmas, we partly drew on Provan and Kenis' governance models and their hypothesised decision-making dilemma for service networks. Results: Identified decision-making dilemmas included 1) autonomy versus interdependence, 2) diversity versus coherence, and 3) self-interest versus common goals. In line with Provan and Kenis' hypothesis, we highlight a cross-cutting dilemma of inclusiveness (all viewpoints are considered hence widely supported decisions) vs. efficiency (reaching timely decisions). Discussion and conclusion: We believe that network- and 'systemic' stakeholders both need to reflect upon and learn from decision-making dilemmas to work towards widely supported and adequate decisions. This is important for achieving aligned and holistic care services that many people desire.

Values Underpinning Integrated, People-Centred Health Services: Similarities and Differences among Actor Groups Across Europe.

Introduction: In addition to the functional aspects of healthcare integration, an understanding of its normative aspects is needed. This study explores the importance of values underpinning integrated, people-centred health services, and examines similarities and differences among the values prioritised by actors across Europe. Methods: Explorative cross-sectional design with quantitative analysis. A questionnaire of 18 values was conducted across Europe. A total of 1,013 respondents indicated the importance of each of the values on a nine-point scale and selected three most important values. Respondents were clustered in four actor groups, and countries in four European sub-regions. Results: The importance scores of values ranged from 7.62 to 8.55 on a nine-point scale. Statistically significant differences among actor groups were found for ten values. Statistically significant differences across European sub-regions were found for six values. Our analysis revealed two clusters of values: 'people related' and 'governance and organisation'. Discussion and conclusion: The study found that all 18 values in the set are considered important by the respondents. Additionally, it revealed distinctions in emphasis among the values prioritised by actor groups and across sub-regions. The study uncovered two clusters of values that contribute to a conceptually based definition of integrated, people-centred health services.

How Different Quality Paradigms Undermine a Shared Value Base for Integrated Care: The Need for Collective Reflexivity.

In the development process of integrated care many impeding factors occur. Our premise is, that many of these barriers are related to the differences in values or perspectives. This article aims to clarify what an important challenge is for the further development of integrated care and for integrated care research. Professionals and managers in integrated care need to cope with and embrace uncertainty. However, that requires collective reflexivity. Collective reflexivity is a means to investigate the values of the partners interacting to co-create integrated care and to remove the roadblocks on the way.

Professionals' views on shared decision-making in severe aortic stenosis.

OBJECTIVE: To provide insight into professionals' perceptions of and experiences with shared decision-making (SDM) in the treatment of symptomatic patients with severe aortic stenosis (AS). METHODS: A semistructured interview study was performed in the heart centres of academic and large teaching hospitals in the Netherlands between June and December 2020. Cardiothoracic surgeons, interventional cardiologists, nurse practitioners and physician assistants (n=21) involved in the decision-making process for treatment of severe AS were interviewed. An inductive thematic analysis was used to identify, analyse and report patterns in the data. RESULTS: Four primary themes were generated: (1) the concept of SDM, (2) knowledge, (3) communication and interaction, and (4) implementation of SDM. Not all respondents considered patient participation as an element of SDM. They experienced a discrepancy between patients' wishes and treatment options. Respondents explained that not knowing patient preferences for health improvement hinders SDM and complicating patient characteristics for patient participation were perceived. A shared responsibility for improving SDM was suggested for patients and all professionals involved in the decision-making process for severe AS. CONCLUSIONS: Professionals struggle to make highly complex treatment decisions part of SDM and to embed patients' expectations of treatment and patients' preferences. Additionally, organisational constraints complicate the SDM process. To ensure sustainable high-quality care, professionals should increase their awareness of patient participation in SDM, and collaboration in the pathway for decision-making in severe AS is required to support the documentation and availability of information according to the principles of SDM.

A sector-wide response to national policy on client-centred care and support: a document analysis of the development of a range of instruments to assess clients' experiences in the care and support for people with (intellectual) disabilities.

BACKGROUND: Client-centred care serves as the foundation for healthcare policy. Indeed, various instruments for assessing clients' experiences of care and support are increasingly used to provide insights into the quality, and client-centred nature, of the care and support provided, which, in turn, aids the development of subsequent improvements. The unique characteristics of care and support for people with intellectual disabilities (ID), such as the need for both lifelong and life-wide care and support across all aspects of clients' lives, led to an initiative within Dutch ID care to jointly develop a range of instruments to assess the experiences of clients receiving ID care and support. Individual clients' experiences and suggestions for improvement, which are embedded in clients' care plan cycles, constitute the foundation of this Range of Instruments. This paper provides a unique, bottom-up, exhaustive account of the process of developing the Range of instruments used to assess the experiences of clients in the field of Dutch ID care. METHODS: Relevant documents at three levels (i.e. 1) national documents, such as policy papers and governmental reports, 2) documents and reports from the Dutch Association of Healthcare Providers for People with Disabilities (VGN) along with minutes from the meetings of the expert Committee who assessed the instruments, and 3) correspondence between the Committee and developers as well as the forms used in the assessment process for each instrument) were qualitatively analysed by two researchers who had no affiliation with the development of the Range of instruments used to assess clients' experiences in ID care and support. All of the documents were inductively coded using a thematic analytical approach. Informants who were either currently or previously involved in the development of these instruments were asked to provide clarification over the documents themselves and to explain the context in which they were produced. RESULTS: The development of the range of instruments can be classified into four phases, namely: 1) supporting the bottom-up development of initiatives to assess clients' experiences, 2) focusing on learning and further development, 3) stimulating exchange between the developers and users of the instruments and the Committee responsible for assessing them, and 4) further development in response to the changing times and new landscape. CONCLUSIONS: The range of instruments were found to be appropriate for a variety of clients in ID care and support, specifically in terms of assessing their individual experiences and gaining insight into their suggestions for improvement, and effective in terms of collaboratively improving the quality of ID care and support. In so doing, these instruments potentially provide an avenue through which clients' experiences can be embedded in the process of ID care and support. Other specific features in the development of these instruments, namely their incremental adoption, ongoing evaluation and strong practice orientation, were also found to be suitable for other care contexts' attempts to respond to the top-down policy objectives of client-centeredness and translating outcomes into direct care practice.

A Decade of Lessons Learned from Integration Strategies in the Netherlands.

INTRODUCTION: In the Netherlands multiple single, cross sector and cross governance level policy reforms were introduced to improve health and social care and decrease fragmentation. In addition to legislative and funding measures, the governmental strategy was to set up long-lasting improvement programs and supported by applied research. DESCRIPTION: Five national improvement programs on chronic disease management, maternity care, youth care, care for older people and dementia care were analysed. The Laws of integration of Leutz were used as an analytical framework. The programs demonstrated a mixture of employing policy, quality and financial measures to stimulate coherence and integration. DISCUSSION: The Laws that Leutz formulated are to a large extent applicable in the Dutch context. However, the characteristics of the system of governance being corporatist in its structure and its culture imply that it is hard to distinguish single actors being in the lead. Integration is a more complex process and requires more dynamics, than the law 'keep it simple, stupid' suggests. CONCLUSIONS: In the Dutch context integration implies a permanent pursuit of aligning mechanisms for integration. Sustainable integration requires long-standing efforts of all relevant stakeholders and cannot be achieved quickly. It may take a decade of consistently applying a mix of policy instruments.

Optimising Integrated Stroke Care in Regional Networks: A Nationwide Self-Assessment Study in 2012, 2015 and 2019.

BACKGROUND: To help enhance the quality of integrated stroke care delivery, regional stroke services networks in the Netherlands participated in a self-assessment study in 2012, 2015 and 2019. METHODS: Coordinators of the regional stroke services networks filled out an online self-assessment questionnaire in 2012, 2015 and 2019. The questionnaire, which was based on the Development Model for Integrated Care, consisted of 97 questions in nine clusters (themes). Cluster scores were calculated as proportions of the activities implemented. Associations between clusters and features of stroke services were assessed by regression analysis. RESULTS: The response rate varied from 93.1% (2012) to 85.5% (2019). Over the years, the regional stroke services networks increased in 'size': the median number of organisations involved and the volume of patients per network increased (7 and 499 in 2019, compared to 5 and 364 in 2012). At the same time, fewer coordinators were appointed for more than 1 day a week in 2019 (35.1%) compared to 2012 (45.9%). Between 2012 and 2019, there were statistically significantly more elements implemented in four out of nine clusters: 'Transparent entrepreneurship' (MD = 18.0% F(1) = 10.693, p = 0.001), 'Roles and tasks' (MD = 14.0% F(1) = 9.255, p = 0.003), 'Patient-centeredness' (MD = 12.9% F(1) = 9.255, p = 0.003), and 'Commitment' (MD = 11.2%, F(1) = 4.982, p = 0.028). A statistically significant positive correlation was found for all clusters between implementation of activities and age of the network. In addition, the number of involved organisations is associated with better execution of implemented activities for 'Transparent entrepreneurship', 'Result-focused learning' and 'Quality of care'. Conversely, there are small but negative associations between the volume of patients and implementation rates for 'Interprofessional teamwork' and 'Patient-centredness'. CONCLUSION: This long-term analyses of stroke service development in the Netherlands, showed that between 2012 and 2019, integrated care activities within the regional stroke networks increased. Experience in collaboration between organisations within a network benefits the uptake of integrated care activities.

Appropriate leadership in nursing home care: a narrative review.

PURPOSE: The purpose of this paper is to synthesize the existing evidence on leadership that best matches nursing home care, with a focus on behaviors, effects and influencing factors. DESIGN/METHODOLOGY/APPROACH: A narrative review was performed in three steps: the establishment of scope, systematic search in five databases and assessment and analysis of the literature identified. FINDINGS: A total of 44 articles were included in the review. The results of the study imply that a stronger focus on leadership behaviors related to the specific context rather than leadership styles could be of added value in nursing home care. RESEARCH LIMITATIONS/IMPLICATIONS: Only articles applicable to nursing home care were included. The definition of "nursing home care" may differ between countries. This study only focused on the academic literature. Future research should focus on strategies and methods for the translation of leadership into behavior in practice. PRACTICAL IMPLICATIONS: A broader and more conceptual perspective on leadership in nursing homes - in which leadership is seen as an attribute of all employees and enacted in multiple layers of the organization - could support leadership practice. ORIGINALITY/VALUE: Leadership is considered an important element in the delivery of good quality nursing home care. This study provides insight into leadership behaviors and influencing contextual factors specifically in nursing homes.

Barriers and facilitators for shared decision making in older patients with multiple chronic conditions: a systematic review.

BACKGROUND: The aim of this study was to describe barriers and facilitators for shared decision making (SDM) as experienced by older patients with multiple chronic conditions (MCCs), informal caregivers and health professionals. METHODS: A structured literature search was conducted with 5 databases. Two reviewers independently assessed studies for eligibility and performed a quality assessment. The results from the included studies were summarized using a predefined taxonomy. RESULTS: Our search yielded 3838 articles. Twenty-eight studies, listing 149 perceived barriers and 67 perceived facilitators for SDM, were included. Due to poor health and cognitive and/or physical impairments, older patients with MCCs participate less in SDM. Poor interpersonal skills of health professionals are perceived as hampering SDM, as do organizational barriers, such as pressure for time and high turnover of patients. However, among older patients with MCCs, SDM could be facilitated when patients share information about personal values, priorities and preferences, as well as information about quality of life and functional status. Informal caregivers may facilitate SDM by assisting patients with decision support, although informal caregivers can also complicate the SDM process, for example, when they have different views on treatment or the patient's capability to be involved. Coordination of care when multiple health professionals are involved is perceived as important. CONCLUSIONS: Although poor health is perceived as a barrier to participate in SDM, the personal experience of living with MCCs is considered valuable input in SDM. An explicit invitation to participate in SDM is important to older adults. Health professionals need a supporting organizational context and good communication skills to devise an individualized approach for patient care.

Parkinson Network Eastern Saxony (PANOS): Reaching Consensus for a Regional Intersectoral Integrated Care Concept for Patients with Parkinson's Disease in the Region of Eastern Saxony, Germany.

As integrated care is recognized as crucial to meet the challenges of chronic conditions such as Parkinson's disease (PD), integrated care networks have emerged internationally and throughout Germany. One of these networks is the Parkinson Network Eastern Saxony (PANOS). PANOS aims to deliver timely and equal care to PD patients with a collaborative intersectoral structured care pathway. Additional components encompass personalized case management, an electronic health record, and communicative and educative measures. To reach an intersectoral consensus of the future collaboration in PANOS, a structured consensus process was conducted in three sequential workshops. Community-based physicians, PD specialists, therapists, scientists and representatives of regulatory authorities and statutory health insurances were asked to rate core pathway-elements and supporting technological, personal and communicative measures. For the majority of core elements/planned measures, a consensus was reached, defined as an agreement by >75% of participants. Additionally, six representatives from all partners involved in the network-design independently assessed PANOS based on the Development Model for Integrated Care (DMIC), a validated model addressing the comprehensiveness and maturity of integrated care concepts. The results show that PANOS is currently in an early maturation state but has the potential to comprehensively represent the DMIC if all planned activities are implemented successfully. Despite the favorable high level of consensus regarding the PANOS concept and despite its potential to become a balanced integrated care concept according to the DMIC, its full implementation remains a considerable challenge.

Improving Person-Centredness in Integrated Care for Older People: Experiences from Thirteen Integrated Care Sites in Europe.

INTRODUCTION: Although person-centredness is a key principle of integrated care, successfully embedding and improving person-centred care for older people remains a challenge. In the context of a cross-European project on integrated care for older people living at home, the objective of this paper is to provide insight at an overarching level, into activities aimed at improving person-centredness within the participating integrated care sites. The paper describes experiences with these activities from the service providers' and service users' perspectives. METHODS: A multiple embedded case study design was conducted that included thirteen integrated care sites for older people living at home. RESULTS: Service providers were positive about the activities that aimed to promote person-centred care and thought that most activities (e.g. comprehensive needs assessment) positively influenced person-centredness. Experiences of service users were mixed. For some activities (e.g. enablement services), discrepancies were identified between the views of service providers and those of service users. DISCUSSION AND CONCLUSION: Evaluating activities aimed at promoting person-centredness from both the service providers' and service users' perspectives showed that not all efforts were successful or had the intended consequences for older people. Involvement of older people in designing improvement activities could ensure that care and support reflect their needs and preferences, and build positive experiences of care and support.

Towards a values framework for integrated health services: an international Delphi study.

BACKGROUND: In order to organize person-centered health services for a growing number of people with multiple complex health and social care needs, a shift from fragmented to integrated health services delivery has to take place. For the organization of governance in integrated health services, it is important to better understand the underlying factors that drive collaboration, decision-making and behavior between individuals and organizations. Therefore, this article focuses on these underlying normative aspects of integrated health services. This study investigates the values that underpin integrated health services delivery as a concept, by examining the extent to which an initial literature based set of underlying values underpins integrated care and the relevance of these values on the different levels of integration. METHODS: An international Delphi study with 33 experts from 13 different countries was carried out to examine the initial set of underlying values of integrated health services. In addition, the relevance of the values was assessed on the different levels of integration: personal level, professional level, management level and system level. RESULTS: The study resulted in a refined set of 18 values of integrated health services developed in three Delphi study rounds. In addition, the results provided insight into the relevance of these values on the personal level (e.g. 'trustful'), professional level (e.g. 'collaborative'), management level (e.g. 'efficient') and system level (e.g. 'comprehensive') of integration. Some of the values score consistent across the different levels of integration while other values score inconsistent across these levels. CONCLUSIONS: The Delphi study resulted in an international normative basis for integrated health services delivery as a concept. The values can be used as ingredients for a values framework and provide a better understanding of the normative aspects of integrated health services delivery. Future research could focus on associated behaviors in practice, the relationship between normative integration and governance, and differences between the value priorities of stakeholder groups.