Working together as scientific and experiential experts: how do current ethical PAR-principles work in a research team with young adults with Developmental Language Disorder?

Participatory Action Research (PAR) brings unique ethical challenges. Scholars have developed seven ethical principles to address these challenges. So far, little has been published on how these ethical principles (are put to) work in different fields. We used the principles to evaluate our collaboration with co-researchers with developmental language disorder (DLD). This article aims to explore how the principles helped to reflect on the ongoing research practice. First, we needed to simplify the language of the principles so that the co-researchers could understand how they relate to concrete practices. Second, the co-researchers needed to be reminded of specific events before they could relate the principles to their own experiences. Lastly, for an evaluation of (co-) researchers dealing with multiple roles, from friend to colleague and client, this theme has been specifically included to the principle of personal integrity, so that it cannot be overlooked. Looking through a care ethical lens, we suggest speaking of practical insights rather than (ethical) principles, as it more clearly communicates that these insights are based on learning by doing and are not fixed, but build on (good) practices, whilst still allowing enough room for adjustments to the particularities inherent to each research process.

Patient perspectives and experiences with psilocybin treatment for treatment-resistant depression: a qualitative study.

Psilocybin is the most researched classic psychedelic for Treatment-Resistant Depression (TRD). While optimizing set and setting are considered essential for efficacy and safety, patient perspectives on these aspects have rarely been investigated. To address this knowledge gap, the current paper explored the experiences of 11 TRD patients (8 women, 3 men) participating in a double-blind randomized clinical trial with a single session of oral (1, 10 or 25 mg) psilocybin treatment. After qualitative analysis, three major themes were identified: (1) challenges with trust-building and expectation management; (2) navigating the experience; and (3) the need for a more comprehensive treatment. Subthemes of the first theme include a general distrust in mental healthcare, trust in study therapists, limited time for preparation, and managing expectations. The second theme included the following subthemes: trusting to surrender, profound and overwhelming experiences, and music as a guide. The third theme addressed a desire for multiple psilocybin sessions, and challenges with sensemaking. Patients' perspectives provided important insights into potential optimization of psilocybin treatment of TRD, including individualized preparation, investment in trust-building, offering additional psilocybin sessions, providing access to sustained (psycho)therapy with trusted therapists, and personalizing treatment approaches, which may also enhance real-world adaption of these treatments.

Lost and changed meaning in life of people with Long Covid: a qualitative study.

Long Covid (LC) has been called the greatest mass-disabling event in human history. For patients, LC not only has implications for quality of life but also for meaning in life: how one's life and the world are understood and what is seen as valuable in one's life. This qualitative empirical study used a Constructivist Grounded Theory approach to investigate the meaning in life of people struggling with LC through ten patient interviews. This study shows that patients lose their prior understanding of life and come to a changed meaning in life, in part due to the experienced (social) isolation and loss of (both physical and cognitive) abilities caused by LC. Moreover, patients struggled with acceptance, uncertainty, and the inherent incomprehensibility and uncontrollability that living with LC entails, though this simultaneously co-existed with hope, optimism and acceptance. Additionally, dimensions of meaning intersect; a patient having some understanding of their illness (dimension of meaning: comprehension) required an understanding Other (dimension of meaning: connection). Emerging from lockdown brought the challenge and isolation of adjusting to chronic illness in society as usual (albeit divided about COVID-19 measures). This study thus offers novel insights regarding changed, present, and sought meaning in life for LC patients.

Living in an 'ordinary' neighborhood? A care-ethical exploration of the experiences of young adults with mild intellectual disabilities.

Care ethics considers the moral good as arising within practices and in people's experiences in these practices. This contribution applies a care-ethical approach to inquire into the effects of a major change in the social domain policy in The Netherlands. The new policy is based upon the expectation that young adults with Mild Intellectual Disabilities (MID) become 'active citizens, participating in their neighborhood', with the support of care organizations and local municipalities. Accordingly, care responsibilities were transferred to the local level (municipalities). On this level, however, basic insights were lacking concerning the needs and wishes of the young adults with Mild Intellectual Disabilities, and concerning the possibilities for local collaboration. Research was performed by taking Joan Tronto's definition of care as a starting point and applying a method adequate to capture young adults' experiences in one municipality. We conclude that this neighborhood is not an environment wherein they can participate. Points of interestThis article offers new insight into the effects of a major change in long-term care policy in the Netherlands that emphasizes participation.Care ethics focusses on practices, in which more than two people are involved, that help meet needs of care (or fail in this respect).The article presents an inquiry into the experiences and needs of six participants living in a Dutch facility where youths and young adults with Mild Intellectual Disability are supported to participate in society, as expressed by themselves in photos and interviews and as observed through the method of shadowing.The results of this inquiry are three aerial photos that show how the participants live in supporting networks with gaps, underscoring their experiences of being displaced and feeling unacknowledged in the vicinity of their home.Different organizations directed at care for young adults with Mild Intellectual Disability can learn from the care needs that result from this way of organizing care.

Phenomenology and therapeutic potential of patient experiences during oral esketamine treatment for treatment-resistant depression: an interpretative phenomenological study.

BACKGROUND: Ketamine and its enantiomers are widely researched and increasingly used to treat mental disorders, especially treatment-resistant depression. The phenomenology of ketamine-induced experiences and their relation to its psychotherapeutic potential have not yet been systematically investigated. AIMS: To describe the phenomenology of patient experiences during oral esketamine treatment for treatment-resistant depression (TRD) and to explore the potential therapeutic relevance of these experiences. METHODS: In-depth interviews were conducted with 17 patients after a 6-week, twice-weekly 'off label' generic oral esketamine (0.5-3.0mg/kg) treatment program. Interviews explored participants' perspectives, expectations, and experiences with oral esketamine treatment. Audio interviews were transcribed and analyzed using an Interpretative Phenomenological Analysis (IPA) framework. RESULTS: The effects of ketamine were highly variable, and psychological distress was common in most patients. Key themes included (a) perceptual effects (auditory, visual, proprioceptive), (b) detachment (from body, self, emotions, and the world), (c) stillness and openness, (d) mystical-type effects (transcendence, relativeness, spirituality), and (e) fear and anxiety. Key themes related to post-session reports included (a) feeling hungover and fatigued, and (b) lifting the blanket: neutralizing mood effects. CONCLUSION: Patients reported several esketamine effects with psychotherapeutic potential, such as increased openness, detachment, an interruption of negativity, and mystical-type experiences. These experiences deserve to be explored further to enhance treatment outcomes in patients with TRD. Given the frequency and severity of the perceived distress, we identify a need for additional support in all stages of esketamine treatment.

COVID-19 as a Crisis of Confinement: What We Can Learn From the Lived Experiences of People With Intellectual Disabilities in Care Institutions.

While the COVID-19 crisis has affected people all around the world, it has not affected everyone in the same way. Besides glaring international differences, disparities in personal and situational factors have resulted in strikingly dissimilar effects even on people within the same country. Special attention is required in this regard for people with intellectual disabilities (ID) who are vulnerable to marginalization and precarization during crises as concerns over safety and public health are likely to trump consideration for inclusion and care. This article explores the lived experiences during the pandemic of people with ID living in care institutions in the Netherlands. Particular attention is paid to the challenges involved in living through periods of confinement and separation in what may be called "vulnerable spaces." Drawing from interviews with individuals with a mild ID who have been restricted in seeing family and friends through the closed access of group homes to visits from outsiders, as well as interviews with their relatives and support workers, the article considers the ways in which stakeholders have responded to these spatial policies and negotiated the meaning of living space in times of crisis.

Holding on or letting go? Patient experiences of control, context, and care in oral esketamine treatment for treatment-resistant depression: A qualitative study.

Background: Ketamine and its enantiomer esketamine represent promising new treatments for treatment-resistant depression (TRD). Esketamine induces acute, transient psychoactive effects. How patients perceive esketamine treatment, and which conditions facilitate optimal outcomes, remains poorly understood. Understanding patient perspectives on these phenomena is important to identify unmet needs, which can be used to improve (es)ketamine treatments. Aims: To explore the perspectives of TRD patients participating in "off label" oral esketamine treatment. Materials and methods: In-depth interviews were conducted with 17 patients (11 women) after a six-week, twice-weekly esketamine treatment program, and subsequently after six months of at-home use. Interviews explored participants' perspectives, expectations, and experiences with esketamine treatment. Audio interviews were transcribed verbatim and analysed following an Interpretative Phenomenological Analysis (IPA) framework. Results: Key themes included overwhelming experiences; inadequate preparation; letting go of control; mood states influencing session experiences; presence and emotional support, and supportive settings. Patients' attempts to let go and give into vs. attempts to maintain control over occasionally overwhelming experiences was a central theme. Multiple factors influenced patients' ability to give into the experience and appeared to impact their mood and anxiety about future sessions, including level of preparation and education, physical and emotional support, and setting during the session. Conclusion: Better preparation beforehand, an optimized treatment setting, and emotional and psychological support during (es)ketamine sessions can help patients to "let go" and may lead to better quality of care and outcomes. Recommendations to improve quality of patient care in (es)ketamine treatment are provided, including suggestions for the training of nurses and other support staff.

Count Your Life by Smiles and Tears: An Integrative Review on Resilience and Growing Older.

The concept of "resilience" is considered helpful in understanding how people navigate adversities typical to later life. It is also a concept of growing interest internationally in research and in social policy and (social) practice. This article employs an integrative review methodology to explore current trends in theoretical and empirical research on resilience. A total of 25 quantitative and qualitative studies from 2011 to 2020 are included in this review. Findings indicate how the reviewed studies typically define resilience from three perspectives: resource-based, outcome-based, and process-based perspectives of resilience. In the results of the same studies, the resource-based and outcome-based perspectives are elaborated upon while detailed results from a process-based perspective are lacking. Additionally, even though adversity is recognized as a key element in conceptualizing resilience, it is scarcely defined if defined at all in the reviewed studies. Further research is recommended in this article to contribute to a realistic and encouraging narrative on growing older in social policy and (social) practice.

Exploring restrictive measures using action research: A participative observational study by nursing staff in nursing homes.

AIM: In nursing homes, nursing staff have a key role in the use of restrictive measures. However, their active role in reducing restrictive measures has so far been limited. The aim of this study is to explore how and when the application of restrictive measures in nursing homes occurs including underlying factors, together with nursing staff. DESIGN: Participatory action research was chosen for a bottom-up understanding of the use of restrictive measures. METHOD: Two Dutch nursing homes participated in 2016/2017 with 18 nursing staff members in the action research team. Nursing staff carried out 33 observations followed by a reflective interview. RESULTS: Nursing staff observed a wide range of restrictions, including restrictions in freedom of choice, not being able to go outside, not being in charge of medication, and a directive/unresponsive care attitude. Factors influencing restrictions included habits and institutionalization, cognitive ability of the resident, availability of personnel, and responsibility for safety. A responsive care attitude and raising awareness were seen as good practices to enhance freedom. CONCLUSIONS: By taking a distant view on their work, nursing staff discovered a broad range of restrictions, including 'less obvious' restrictions. Active forms of learning may position nursing staff to discuss and reduce restrictive measures. IMPACT: What problem did the study address?: Restrictive measures are still common in nursing homes. Despite their key role in using restrictive measures, nursing staff's active role in research has been limited. What were the main findings?: By participating as researchers, nursing staff gained a broader perspective on restrictive measures. Many 'less obvious' restrictions were related to routines and institutionalization and were considered as eye opening by nursing staff. Where and on whom will the research have impact?: Active forms of learning such as observing and reflecting has the potential to position nursing staff as 'agents of change'.

Psychedelic Treatments for Psychiatric Disorders: A Systematic Review and Thematic Synthesis of Patient Experiences in Qualitative Studies.

INTRODUCTION: Interest in the use of psychedelic substances for the treatment of mental disorders is increasing. Processes that may affect therapeutic change are not yet fully understood. Qualitative research methods are increasingly used to examine patient accounts; however, currently, no systematic review exists that synthesizes these findings in relation to the use of psychedelics for the treatment of mental disorders. OBJECTIVE: To provide an overview of salient themes in patient experiences of psychedelic treatments for mental disorders, presenting both common and diverging elements in patients' accounts, and elucidating how these affect the treatment process. METHODS: We systematically searched the PubMed, MEDLINE, PsycINFO, and Embase databases for English-language qualitative literature without time limitations. Inclusion criteria were qualitative research design; peer-reviewed studies; based on verbalized patient utterances; and a level of abstraction or analysis of the results. Thematic synthesis was used to analyze and synthesize results across studies. A critical appraisal of study quality and methodological rigor was conducted using the Critical Appraisal Skills Programme (CASP). RESULTS: Fifteen research articles, comprising 178 patient experiences, were included. Studies exhibited a broad heterogeneity in terms of substance, mental disorder, treatment context, and qualitative methodology. Substances included psilocybin, lysergic acid diethylamide (LSD), ibogaine, ayahuasca, ketamine and 3,4-methylenedioxymethamphetamine (MDMA). Disorders included anxiety, depression, eating disorders, post-traumatic stress disorder, and substance use disorders. While the included compounds were heterogeneous in pharmacology and treatment contexts, patients reported largely comparable experiences across disorders, which included phenomenological analogous effects, perspectives on the intervention, therapeutic processes and treatment outcomes. Comparable therapeutic processes included insights, altered self-perception, increased connectedness, transcendental experiences, and an expanded emotional spectrum, which patients reported contributed to clinically and personally relevant responses. CONCLUSIONS: This review demonstrates how qualitative research of psychedelic treatments can contribute to distinguishing specific features of specific substances, and carry otherwise undiscovered implications for the treatment of specific psychiatric disorders.

Nurses' knowledge and deliberations crucial to Barcoded Medication Administration technology in a Dutch hospital: Discovering nurses' agency inside ruling.

This article shows how Barcoded Medication Administration technology institutionally organizes and rules the daily actions of nurses. Although it is widely assumed that Barcoded Medication Administration technology improves quality and safety by reducing the risk of human error, little research has been done on how this technology alters the work of nurses. Drawing on empirical and conceptual strategies of analysis, this qualitative study used certain tools of institutional ethnography to provide a view of how nurses negotiate Barcoded Medication Administration technology. The approach also uses elements from practice theory in order to discern how technology operates as a player on the field instead of being viewed as a 'mere' tool. A literature review preceded participant observation, whereby 17 nurses were followed and data on an orthopaedic ward were collected over a period of 9 months in 2011 and 2012. Barcoded Medication Administration technology relies on nurses' knowledge to mediate between the embedded logics of its design and the unpredictable needs of patients. Nurses negotiate their own professional logic of care in the form of moment-to-moment deliberations which subvert the ruling frame of the barcoded system and its objectified model of patient safety. The logic of Barcoded Medication Administration technology differs from the logic of nursing care, as this technology presumes medication distribution to be linear, even though nurses follow another line of actor-bound safety practices that we characterize as 'deliberations'.

HOW BAR CODED MEDICATION ADMINISTRATION TECHNOLOGY AFFECTS THE NURSE-PATIENT RELATIONSHIPS: AN ETHNOGRAPHIC STUDY.

OBJECTIVES: This study aims to assess how care is mediated through technology by analyzing the interaction between nurses, patients, and a Bar Coded Medication Administration (BCMA) system. The objective is to explore how patients experience care through medication technology, with the main focus of our observations and interviews on nurses rather than patients. METHODS: A qualitative ethnographic study was conducted in an orthopedic ward of a Dutch general hospital. RESULTS: After analyses, the following two themes were discerned: (i) the use of bar code medication technology organizes double institutionalization, and (ii) nurses frequently need to work around the BCMA, as the system is not always supportive of patient needs. CONCLUSIONS: The results of this study indicate that BCMA is not merely a neutral tool, but an active component within the nurse-patient relationship, as it influences medication administration and profoundly affects patient participation in the care process.

Rethinking critical reflection on care: late modern uncertainty and the implications for care ethics.

Care ethics as initiated by Gilligan, Held, Tronto and others (in the nineteen eighties and nineties) has from its onset been critical towards ethical concepts established in modernity, like 'autonomy', alternatively proposing to think from within relationships and to pay attention to power. In this article the question is raised whether renewal in this same critical vein is necessary and possible as late modern circumstances require rethinking the care ethical inquiry. Two late modern realities that invite to rethink care ethics are complexity and precariousness. Late modern organizations, like the general hospital, codetermined by various (control-, information-, safety-, accountability-) systems are characterized by complexity and the need for complexity reduction, both permeating care practices. By means of a heuristic use of the concept of precariousness, taken as the installment of uncertainty, it is shown that relations and power in late modern care organizations have changed, precluding the use of a straightforward domination idea of power. In the final section a proposition is made how to rethink the care ethical inquiry in order to take late modern circumstances into account: inquiry should always be related to the concerns of people and practitioners from within care practices.

Tinker, tailor, deliberate. An ethnographic inquiry into the institutionalized practice of bar-coded medication administration technology by nurses.

AIM: Explore the practice of nurses working with bar-coded medication administration technology, to gain insight in the impact it has on their work. BACKGROUND: The widespread presumption of using Barcoded Medication Administration Technology (BCMA) is that it will effectively reduce the number of errors in the dispensing of medication to patients. However, it remains unclear whether this is the case in actual practice. METHOD: Two distinct but overlapping research methodologies of Institutional Ethnography and Praxeology were combined as a means to uncover the highly complex practice of BCMA by nurses. RESULTS: The implementation of BCMA creates a series of problems leading to nurses constantly tinkering with the technology. At the same time they are continuously deliberating the best ways of tailoring the BCMA to each of their patients. CONCLUSION: Although working with BCMA is often misconstrued as being mindless and automatic, conforming to the technology, this tinkering with BCMA in fact always entails thorough deliberation by nurses.

Is technology the best medicine? Three practice theoretical perspectives on medication administration technologies in nursing.

Even though it is often presumed that the use of technology like medication administration technology is both safer and more effective, the importance of nurses' know-how is not to be underestimated. In this article, we accordingly try to argue that nurses' labor, including their different forms of knowledge, must play a crucial role in the development, implementation and use of medication administration technology. Using three different theoretical perspectives ('heuristic lenses') and integrating this with our own ethnographic research, we will explore how nursing practices change through the use of medication technology. Ultimately, we will argue that ignoring (institutional) complexity and the various types of important knowledge that nurses have, will seriously complicate the implementation of medication administration technology.

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.

CE: Original research: the use of surveillance technology in residential facilities for people with dementia or intellectual disabilities: a study among nurses and support staff.

BACKGROUND: The use of surveillance technology in residential care facilities for people with dementia or intellectual disabilities is often promoted both as a solution to understaffing and as a means to increasing clients' autonomy. But there are fears that such use might attenuate the care relationship. OBJECTIVE: To investigate how surveillance technology is actually being used by nurses and support staff in residential care facilities for people with dementia or intellectual disabilities, in order to explore the possible benefits and drawbacks of this technology in practice. METHODS: An ethnographic field study was carried out in two residential care facilities: a nursing home for people with dementia and a facility for people with intellectual disabilities. Data were collected through field observations and informal conversations as well as through formal interviews. RESULTS: Five overarching themes on the use of surveillance technology emerged from the data: continuing to do rounds, alarm fatigue, keeping clients in close proximity, locking the doors, and forgetting to take certain devices off. Despite the presence of surveillance technology, participants still continued their rounds. Alarm fatigue sometimes led participants to turn devices off. Though the technology allowed wandering clients to be tracked more easily, participants often preferred keeping clients nearby, and preferably behind locked doors at night. At times participants forgot to remove less visible devices (such as electronic bracelets) when the original reason for use expired. CONCLUSIONS: A more nuanced view of the benefits and drawbacks of surveillance technology is called for. Study participants tended to incorporate surveillance technology into existing care routines and to do so with some reluctance and reservation. They also tended to favor certain technologies, for example, making intensive use of certain devices (such as digital enhanced cordless telecommunications phones) while demonstrating ambivalence about others (such as the tagging and tracking systems). Client safety and physical proximity seemed to be dominant values, suggesting that the fear that surveillance technology will cause attenuation of the care relationship is unfounded. On the other hand, the values of client freedom and autonomy seemed less influential; participants often appeared unwilling to take risks with the technology. Care facilities wishing to implement surveillance technology should encourage ongoing dialogue on how staff members view and understand the concepts of autonomy and risk. A clear and well-formulated vision for the use of surveillance technology-one understood and supported by all stakeholders-seems imperative to successful implementation.

Surveillance technology: an alternative to physical restraints? A qualitative study among professionals working in nursing homes for people with dementia.

BACKGROUND: Working with surveillance technology as an alternative to traditional restraints creates obvious differences in the way care is organised. It is not clear whether professional caregivers find working with surveillance technology useful and workable and whether surveillance technology is indeed used to diminish restraint use. OBJECTIVES: The aim of this study was to obtain an insight into the view of Dutch dementia care professionals on the feasibility of surveillance technology as an alternative to physical restraints. DESIGN: Qualitative study. SETTING: The study was carried out in seven nursing homes for people with dementia in The Netherlands. PARTICIPANTS AND METHODS: Semi-structured interviews were held with nine key persons from seven nursing homes for people with dementia. Also, six focus group discussions were held with groups of nurses and two focus group discussions were held with multidisciplinary teams. RESULTS: The dementia care professionals named three different ways in which surveillance technology can be used: to provide safety in general, to provide additional safety, and to provide more freedom for the residents. In addition to this, the dementia care professionals mentioned four limitations in the use of surveillance technology: it is unable to prevent falling, it cannot guarantee quick help, it does not always work properly, and it could violate privacy. CONCLUSION: Dementia care professionals consider surveillance technology supplemental to physical restraints, rather than as an alternative. Improvement of devices and education of care professionals might increase the support for using surveillance technology as an alternative to physical restraints.

Ethics of using assistive technology in the care for community-dwelling elderly people: an overview of the literature.

OBJECTIVES: This article provides an overview of the international literature on the most important ethical considerations in the field of assistive technology (AT) in the care for community-dwelling elderly people, focused on dementia. METHOD: A systematic literature review was performed. RESULTS: A total of 46 papers met the inclusion criteria. Three main themes were found. The first theme, personal living environment, involves the subthemes privacy, autonomy and obtrusiveness. The second theme, the outside world, involves the subthemes stigma and human contact. The third theme, the design of AT devices, involves the subthemes individual approach, affordability and safety. The often referred to umbrella term of 'obtrusiveness' is frequently used by many authors in the discussion, while a clear description of the concept is mostly absent. CONCLUSION: When it comes to AT use in the care for elderly people living at home, ethical debate appears not to be a priority. The little discussion there relies heavily on thick concepts such as autonomy and obtrusiveness which seem to complicate the debate rather than clarify it, because they contain many underlying ambiguous concepts and assumptions. Most encountered ethical objections originate from the view that people are, or should be, independent and self-determinant. It is questionable whether the view is correct and helpful in the debate on AT use in the care for (frail) elderly people. Other ethical approaches that view people as social and reciprocal might be more applicable and shed a different light on the ethical aspects of AT use.

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.