The value of experts by experience in social domain supervision in the Netherlands: results from a 'mystery guests' project.

BACKGROUND: User involvement and participation in the supervision of the quality of care is an important topic for many healthcare inspectorates. It offers regulators an additional view on quality, increases the legitimacy and accountability of the inspectorate, empowers users and enhancing the public's trust in the inspectorate. To assess the accessibility of the local governmental social domain services the Joint Inspectorate Social Domain in the Netherlands worked together with people with intellectual disabilities performing as 'mystery guests' in an innovative project. This paper describes the findings of the evaluation of this project. METHODS: People with intellectual disabilities living at home on their own may need some help with daily activities such as administrative tasks, raising children, household tasks, managing debts or finding work. In the Netherlands they have to arrange this help at their municipality. The goal of this project was to find out how easily people with intellectual disabilities could get help from their municipality. The participants were equal partners with the JISD inspectors from the beginning: in constructing an inspection framework, in acting as mystery guest with a fictive support request, reported back the results by storytelling. RESULTS: The evaluation of the project showed that the JISD succeeded in their key aspect of the project: the goal to involve people with intellectual disabilities in a leading role from the beginning until the end. Their perspectives and preferences were the starting point of supervision. Pain points in accessibility became clear straight away and gave important insights for both inspectors as municipality professionals. Municipalities started to improve their services and evaluated the improvements with the clients. Furthermore, the impact on the participants themselves was also huge: they felt being taken seriously, valued and empowered. CONCLUSION: Involving people with intellectual disabilities as participants in all phases of supervision processes contributes to more relevant and useful outcomes, creates mutual understanding of perspectives, as affirmed by both municipalities and inspectors, and creates empowerment of the participants. Furthermore, it fits perfectly within the United Nation Convention on the rights of persons with disabilities and the current development of 'value driven regulation'.

Involuntary care - capturing the experience of people with dementia in nursing homes. A concept mapping study.

OBJECTIVE: To avoid restraints and involuntary care caregivers should be aware if and how a patient resists care. This article focuses on behavioural expressions of people with severe dementia in nursing homes that are interpreted by their formal and informal caregivers as possible expressions of their experience of involuntary care. METHOD: Concept mapping was used, following five steps: (1) brainstorming, (2) rating, (3) sorting, (4) statistical analysis & visual representation and (5) interpretation. Specialists (n = 12), nurses (n = 23) and relatives (n = 13) participated in separate groups . RESULTS: The views generated are grouped into clusters of behaviour, presented in graphic charts for each of the respondent groups. The large variety of behavioural symptoms includes, in all groups, not only the more obvious and direct behavioural expressions like aggression, resistance and agitation, but also more subtle behaviour such as sorrow, general discomfort or discontent. CONCLUSION(S): In the interpretation of behavioural symptoms of people with severe dementia it is important to take into account the possibility of that person experiencing involuntary care. Increased awareness and understanding of the meaning and consequences of the behavioural expressions is an important step in improving dementia care by avoiding restraints and involuntary care to its maximum.

Restraint interventions in people with moderate to profound intellectual disabilities: Perspectives of support staff and family members.

BACKGROUND: Due to incompatibilities in communication, it is key that family members and support staff can take the perspective of people with moderate to profound intellectual disabilities (ID) whilst putting aside their own perspectives. METHOD: Ten vignettes describing types of restraint interventions (RIs) were presented to 20 unique pairs of support staff and family members related to individuals with moderate to profound ID. RESULTS: In taking their own perspective, more than half of the support staff and family members perceived all RIs as involuntary and severe. In contrast, when asked to put themselves in the position of the client/family member, only three RIs were considered involuntary by a majority of support staff and family members. CONCLUSIONS: These results indicate that support staff and family members can take into account the perspective of people with moderate to profound ID in the evaluation and consideration of involuntary care.

The experiences of people with dementia and intellectual disabilities with surveillance technologies in residential care.

BACKGROUND: Surveillance technology such as tag and tracking systems and video surveillance could increase the freedom of movement and consequently autonomy of clients in long-term residential care settings, but is also perceived as an intrusion on autonomy including privacy. OBJECTIVE: To explore how clients in residential care experience surveillance technology in order to assess how surveillance technology might influence autonomy. SETTING: Two long-term residential care facilities: a nursing home for people with dementia and a care facility for people with intellectual disabilities. METHODS: Ethnographic field study. ETHICAL CONSIDERATIONS: The boards representing clients and relatives/proxies of the clients were informed of the study and gave their written consent. The clients' assent was sought through a special information leaflet. At any time clients and/or proxy were given the option to withdraw from the study. The research protocol was also reviewed by a medical ethics committee. FINDINGS: Our findings show a pattern of two themes: (1) coping with new spaces which entailed clients: wandering around, getting lost, being triggered, and retreating to new spaces and (2) resisting the surveillance technology measure because clients feel stigmatized, missed the company, and do not like being "watched." CONCLUSION: Client experiences of surveillance technology appear to entail a certain ambivalence. This is in part due to the variety in surveillance technology devices, with each device bringing its own connotations and experiences. But it also lies in the devices' presupposition of an ideal user, which is at odds with the actual user who is inherently vulnerable. Surveillance technology can contribute to the autonomy of clients in long-term care, but only if it is set in a truly person-centered approach.

The ideal application of surveillance technology in residential care for people with dementia.

BACKGROUND: As our society is ageing, nursing homes are finding it increasingly difficult to deal with an expanding population of patients with dementia and a decreasing workforce. A potential answer to this problem might lie in the use of technology. However, the use and application of surveillance technology in dementia care has led to considerable ethical debate among healthcare professionals and ethicists, with no clear consensus to date. AIM: To explore how surveillance technology is viewed by care professionals and ethicists working in the field, by investigating the ideal application of surveillance technology in the residential care of people with dementia. METHODS: Use was made of the concept mapping method, a computer-assisted procedure consisting of five steps: brainstorming, prioritizing, clustering, processing by the computer and analysis. Various participants (ranging from ethicists to physicians and nurses) were invited on the basis of their professional background. RESULTS: The views generated are grouped into six categories ranging from the need for a right balance between freedom and security, to be beneficial and tailored to the resident, and clearly defined procedures to competent and caring personnel, active monitoring and clear normative guidance. The results are presented in the form of a graphic chart. CONCLUSIONS: There appears to be an inherent duality in the views on using surveillance technology which is rooted in the moral conflict between safety and freedom. Elaboration of this ethical issue has proved to be very difficult.

[Doctors and lawyers in the disciplinary board: cooperation with added value]. / Overleg achter gesloten deuren.

Doctors and lawyers in the disciplinary board work together intensively, each from their own professional perspective, whereby the mutual dynamics greatly benefit the quality of the judgments: 1+1=3. How this cooperation takes place is not always visible to outsiders. After all, the session of the disciplinary board is public, but what is discussed before and after the session in the council chamber is decided and only comes out in the form of the ruling. How does that process work in the council chamber? Does the input of lawyers and doctors differ? What if they disagree? How do they reach an agreement? In this contribution two lawyers, a doctor and former doctor (member-lawyer), four authors from the Central Disciplinary Board for Health Care (CTG), give an insight into the chemistry between lawyers and doctors of the CTG.

Ethical and practical concerns of surveillance technologies in residential care for people with dementia or intellectual disabilities: an overview of the literature.

BACKGROUND: Technology has emerged as a potential solution to alleviate some of the pressures on an already overburdened care system, thereby meeting the growing needs of an expanding population of seriously cognitively impaired people. However, questions arise as to what extent technologies are already being used in residential care and how ethically and practically acceptable this use would be. METHODS: A systematic literature review was conducted to explore what is known on the moral and practical acceptability of surveillance technologies in residential care for people with dementia or intellectual disabilities, and to set forth the state of the debate. RESULTS: A total of 79 papers met the inclusion criteria. The findings show that application and use of surveillance technologies in residential care for vulnerable people generates considerable ethical debate. This ethical debate centers not so much around the effects of technology, but rather around the moral acceptability of those effects, especially when a conflict arises between the interests of the institution and the interests of the resident. However, the majority of articles lack in depth analysis. Furthermore, there are notable cultural differences between the European literature and American literature whereby in Britain there seems to be more ethical debate than in America. Overall however, there is little attention for the resident perspective. CONCLUSION: No ethical consensus has yet been reached, underlining the need for clear(er) policies. More research is thus recommended to determine ethical and practical viability of surveillance technologies whereby research should be specifically focused on the resident perspective.

[The Psychiatric Hospitals (Compulsory Admissions) Act ceases to exist; what does this mean for treating physicians and patients?] / De Wet Bopz houdt op te bestaan; wat betekent dat voor behandelend artsen en patiënten?

The Psychiatric Hospitals (Compulsory Admissions) Act, Wet BOPZ in Dutch, will be replaced by two new laws as of 1 January 2020. This has many implications for patients as well as the physicians treating them. The new laws are emphasising treatment rather than admission. They also provide for more forms of treatment at home. However, there are several practical and fundamental sticking points and issues of coordination between the two laws.

[Involuntary admission to psychiatric care of people with mild intellectual disability: missed chances in the Dutch Care and Coercion Act]. / Onvrijwillige zorg bij mensen met een lichte verstandelijke beperking: gemiste kansen in de Wet Zorg en Dwang.

The aim of the Dutch Care and Coercion Act (Wet Zorg en Dwang) is to improve the legal position of people with an intellectual disability in cases of involuntary admission to psychiatric care. The present law, the Dutch Psychiatric Act (Wet BOPZ), only offers legal protection to clients who are admitted involuntarily to specific institutions. The Care and Coercion Act will lead to significant changes in the care of people with an intellectual disability and a much larger group of clients with an intellectual disability will fall under the range of this Act. Limitations to freedom - referred to as 'involuntary admission' within the new law - must meet the same criteria for each client. The legislator, however, seems to have paid little attention to those clients with a mild intellectual disability.

Dialogical nursing ethics: the quality of freedom restrictions.

This article deals with the question of how ethicists respond to practical moral problems emerging in health care practices. Do they remain distanced, taking on the role of an expert, or do they become engaged with nurses and other participants in practice and jointly develop contextualized insights about good care? A basic assumption of dialogical ethics entails that the definition of good care and what it means to be a good nurse is a collaborative product of ongoing dialogues among various stakeholders engaged in the practice. This article discusses the value of a dialogical approach to ethics by drawing on the work of various nursing scholars. We present a case example concerning the quality of freedom restrictions for intellectually disabled people. Issues for discussion include the role and required competences of the ethicist and dealing with asymmetrical relationships between stakeholders.