'Practice what you preach'. Perspectives on the involvement of people with dementia and carers in community-based dementia friendly initiatives, a qualitative study.

Introduction: People with dementia and their carers experience social stigma and often refrain from social participation. Significant improvement might be achieved by creating Dementia Friendly communities (DFCs) for which dementia friendly initiatives (DFIs) are needed. DFIs are developed by a variation of stakeholders. However, people with dementia and their carers are often unrepresented herein. This study aims to get insight into the perspectives of stakeholders (e.g., health- and social care professionals, volunteers, people with dementia and their carers) about the involvement of people with dementia and their carers during the development and sustainment of DFIs. Methods: Descriptive qualitative study, using a co-research design with a carer as co-researcher. Nineteen semi-structured interviews with stakeholders, including people with dementia and their carers, were performed. Inductive content analysis took place using Atlas Ti. Results: Four themes were found: 1) the involvement of people with dementia and their carers is important for both people with dementia and their carers and other stakeholders; 2) personal character traits, life histories, and associated emotions evoke the need for involvement; 3) involvement requires an open, responsive stance and building relationships; and 4) the estimation of one's own and others' capacities influences perspectives on involvement. As such, practice what you preach means actively adopting an open, responsive approach and acknowledging the unique abilities and backgrounds of people with dementia and their carers. It emphasizes the importance of actually living by the values you advocate for. Conclusion: Central to perspectives on involving people with dementia and their carers is the emphasis on working relationally, differing from service-led and pre-structured patient and public involvement (PPI). Working relationally calls for organizational shifts aligned with a rights-based perspective to avoid tokenism, and promotion of user-led organizations with genuine partnerships. Creative methods, problem-solving, and communication skills are essential for the development and sustainment of inclusive, supportive, person-centered DFIs. Future studies should explore the long-term impact of the involvement and working relationally on the well-being of people with dementia and their carers.

[Is the approach of delirium in Dutch nursing-homes in accordance with the national guideline?] / Is de aanpak van delier in Nederlandse verpleeghuizen conform de richtlijn?

INTRODUCTION: Delirium is a common disorder, affecting many patients in nursing-homes, with large impact on patients. Implementation of good care and treatment can potentially prevent development of a delirium or may reduce the severity or duration. This research was conducted to get an impression of delirium care in Dutch nursing homes, and of the implementation of the recommendations of the national guideline. OBJECTIVES: 1. How many Dutch nursing homes have a local protocol for delirium?2. To what extend do doctors, specialised in care for older people in nursing homes, screen, diagnose and treat delirium according to the Dutch guideline for delirium? METHODS: Between June and December 2016, Dutch nursing homes were approached with an online questionnaire. Data were collected in Survey Monkey and descriptive analyses were performed. RESULTS: 68 nursing homes were included. 32% of the nursing homes had a local delirium protocol. 48% of the doctors knew about the national guideline delirium, 60% used preventive measures, and screening instruments were used in 98%. 29% used diagnostic criteria. Non-medical interventions were applied by 96%. In 98%, haloperidol was the drug of first choice. Preventive antipsychotics were prescribed by 21%. CONCLUSIONS: Only a third of the organisations developed a local delirium protocol. Standardising delirium care by a local delirium protocol, with special attention for prevention, diagnostics and aftercare of delirium, can be an important step in improving the quality of care in nursing homes.

Work-related change in residential elderly care: Trust, space and connectedness.

Increasing care needs and a declining workforce put pressure on the quality and continuity of long-term elderly care. The need to attract and retain a solid workforce is increasingly acknowledged. This study reports about a change initiative that aimed to improve the quality of care and working life in residential elderly care. The research focus is on understanding the process of workforce change and development, by retrospectively exploring the experiences of care professionals. A responsive evaluation was conducted at a nursing home department in the Netherlands one year after participating in the change program. Data were gathered by participant observations, interviews and a focus and dialogue group. A thematic analysis was conducted. Care professionals reported changes in workplace climate and interpersonal interactions. We identified trust, space and connectedness as important concepts to understand perceived change. Findings suggest that the interplay between trust and space fostered interpersonal connectedness. Connectedness improved the quality of relationships, contributing to the well-being of the workforce. We consider the nature and contradictions within the process of change, and discuss how gained insights help to improve quality of working life in residential elderly care and how this may reflect in the quality of care provision.

Quality-of-life of patients with Parkinson's disease.

PRIMARY OBJECTIVE: To describe factors influencing the QoL of patients with Parkinson's disease (PD), as experienced by patients themselves. RESEARCH DESIGN: A qualitative design was used to investigate which factors influence the QoL of patients with PD as this design allows one to focus sufficiently on (reporting) the experiences of patients and their perspectives. METHODS AND PROCEDURES: Interviews with patients (n = 27) were organized which formed the input for four focus groups and participants were selected by the Dutch Parkinson Association (PV). MAIN OUTCOMES AND RESULTS: The results illustrate that patients mentioned a broad array of issues related to their QoL, including intra- and interpersonal factors, quality of care, societal pressure and communication. Participants developed a model symbolizing a radar wheel to illuminate the complex and dynamic inter-relations between the themes affecting their QoL. How the set of factors actually influences a person's life differs per patient and per situation. CONCLUSIONS: The QoL of patients with PD is influenced by many interacting factors related to their health, personal relations, care, communication and society. To improve the QoL and care for persons with PD, all factors should be taken into account. Person-centred care recognizes the uniqueness and capabilities of patients with PD.

Outcomes of moral case deliberation--the development of an evaluation instrument for clinical ethics support (the Euro-MCD).

BACKGROUND: Clinical ethics support, in particular Moral Case Deliberation, aims to support health care providers to manage ethically difficult situations. However, there is a lack of evaluation instruments regarding outcomes of clinical ethics support in general and regarding Moral Case Deliberation (MCD) in particular. There also is a lack of clarity and consensuses regarding which MCD outcomes are beneficial. In addition, MCD outcomes might be context-sensitive. Against this background, there is a need for a standardised but flexible outcome evaluation instrument. The aim of this study was to develop a multi-contextual evaluation instrument measuring health care providers' experiences and perceived importance of outcomes of Moral Case Deliberation. METHODS: A multi-item instrument for assessing outcomes of Moral Case Deliberation (MCD) was constructed through an iterative process, founded on a literature review and modified through a multistep review by ethicists and health care providers. The instrument measures perceived importance of outcomes before and after MCD, as well as experienced outcomes during MCD and in daily work. A purposeful sample of 86 European participants contributed to a Delphi panel and content validity testing. The Delphi panel (n = 13), consisting of ethicists and ethics researchers, participated in three Delphi-rounds. Health care providers (n = 73) participated in the content validity testing through 'think-aloud' interviews and a method using Content Validity Index. RESULTS: The development process resulted in the European Moral Case Deliberation Outcomes Instrument (Euro-MCD), which consists of two sections, one to be completed before a participant's first MCD and the other after completing multiple MCDs. The instrument contains a few open-ended questions and 26 specific items with a corresponding rating/response scale representing various MCD outcomes. The items were categorised into the following six domains: Enhanced emotional support, Enhanced collaboration, Improved moral reflexivity, Improved moral attitude, Improvement on organizational level and Concrete results. CONCLUSIONS: A tentative instrument has been developed that seems to cover main outcomes of Moral Case Deliberation. The next step will be to test the Euro-MCD in a field study.

Implicit and explicit clinical ethics support in The Netherlands: a mixed methods overview study.

Internationally, the prevalence of clinical ethics support (CES) in health care has increased over the years. Previous research on CES focused primarily on ethics committees and ethics consultation, mostly within the context of hospital care. The purpose of this article is to investigate the prevalence of different kinds of CES in various Dutch health care domains, including hospital care, mental health care, elderly care and care for people with an intellectual disability. A mixed methods design was used including two survey questionnaires, sent to all health care institutions, two focus groups and 17 interviews with managing directors or ethics support staff. The findings demonstrate that the presence of ethics committees is relatively high, especially in hospitals. Moral case deliberation (MCD) is available in about half of all Dutch health care institutions, and in two-thirds of the mental health care institutions. Ethics consultants are not very prominent. A distinction is made between explicit CES forms, in which the ethical dimension of care is structurally and professionally addressed and implicit CES forms, in which ethical issues are handled indirectly and in an organic way. Explicit CES forms often go together with implicit forms of CES. MCD might function as a bridge between the two. We conclude that explicit and implicit CES are both relevant for clinical ethics in health care. We recommend research regarding how to combine them in an appropriate way.

Prevalence and characteristics of moral case deliberation in Dutch health care.

The attention for Moral case deliberation (MCD) has increased over the past years. Previous research on MCD is often written from the perspective of MCD experts or MCD participants and we lack a more distant view to the role of MCD in Dutch health care institutions in general. The purpose of this paper is to provide an overview of the state of the art concerning MCD in the Netherlands. As part of a larger national study on clinical ethics support in the Netherlands, we will focus on the prevalence and characteristics of MCD in Dutch health. A mixed methods design was used in which we combined two survey questionnaires (sent to all health care institutions), two focus groups and 17 individual interviews with top managers or ethics support staff. The findings demonstrate that the prevalence of MCD is relatively high in Dutch health care (44 % has MCD), especially in mental health care (in which MCD is mentioned as present in the organization by 62 % of the respondents). Institutions with MCD differ from institutions without MCD concerning size, kind of problems and importance of ideological background. Characteristic of MCD is that it often exists for 3 years or more, has a high participation of health professionals and middle managers and is both organized scheduled as unscheduled. As well integration in existing policy as key persons emerge as important issues in relation to the positioning of MCD. We conclude that MCD is a part of an integrated ethics policy and serves as a (bottom up) catalyst for such an integrated ethics policy.

Morality in the mundane: specific needs for ethics support in elderly care.

Ethics support is called for to improve the quality of care in elderly institutions. Various forms of ethics support are presented, but the needs for ethics support remain unknown. Using a mixed-methods design, this article systematically investigates the specific needs for ethics support in elderly care. The findings of two surveys, two focus groups and 17 interviews demonstrate that the availability of ethics support is limited. There is a need for ethics support, albeit not unconditionally. Advice-based forms of ethics support are less appropriate as they are removed from practice. Ethics support should be tailored to the often mundane and easily overlooked moral issues that arise in long-term care. Attention should also be given to the learning styles of nurses who favour experiential learning. Raising awareness and developing a climate of openness and dialogue are the most suitable ways to deal with the mundane moral issues in elderly care.

Need for ethics support in healthcare institutions: views of Dutch board members and ethics support staff.

OBJECTIVE: The purpose of this article is to investigate the need for ethics support in Dutch healthcare institutions in order to understand why ethics support is often not used in practice and which factors are relevant in this context. METHODS: This study had a mixed methods design integrating quantitative and qualitative research methods. Two survey questionnaires, two focus groups and 17 interviews were conducted among board members and ethics support staff in Dutch healthcare institutions. FINDINGS: Most respondents see a need for ethics support. This need is related to the complexity of contemporary healthcare, the contribution of ethics support to the core business of the organisation and to the surplus value of paying structural attention to ethical issues. The need for ethics support is, however, not unconditional. Reasons for a lacking need include: aversion of innovations, negative associations with the notion of ethics support service, and organisational factors like resources and setting. CONCLUSION: There is a conditioned need for ethics support in Dutch healthcare institutions. The promotion of ethics support in healthcare can be fostered by focusing on formats which fit the needs of (practitioners in) healthcare institutions. The emphasis should be on creating a (culture of) dialogue about the complex situations which emerge daily in contemporary healthcare practice.