Field-Testing the Euro-MCD Instrument: Important Outcomes According to Participants Before and After Moral Case Deliberation.

Ethics support services like Moral Case Deliberation (MCD) intend to support healthcare professionals in ethically difficult situations. To assess outcomes of MCD, the Euro-MCD Instrument has been developed. Field studies to test this instrument are needed and have been conducted, examining important outcomes before MCD participation and experienced outcomes. The current study aimed to (1) describe how participants' perceive the importance of MCD outcomes after MCD; (2) compare these perceptions with those before MCD participation; and (3) test the factor structure of these outcomes. Swedish, Norwegian and Dutch healthcare professionals rated the importance of outcomes in the Euro-MCD Instrument after four and eight MCDs. Ratings were compared with those before MCD participation using paired and independent samples t-tests. The factor structure was tested using exploratory factor analyses. After 4 and 8 MCDs, 443 respectively 247 respondents completed the instrument. More than 69% rated all MCD outcomes as 'quite' or 'very' important, especially outcomes from Enhanced Collaboration, Improved Moral Reflexivity and Improved Moral Attitude. Significant differences for 16 outcomes regarding ratings before and after MCD participation were not considered meaningful. Factor analyses suggested three categories, which seemingly resemble the domains Improved Moral Reflexivity, Enhanced Collaboration and a combination of Improved Moral Attitude and Enhanced Emotional Support. After participation in MCDs, respondents confirmed the importance of outcomes in the Euro-MCD Instrument. The question on perceived importance and the categorization of outcomes need reconsideration. The revised instrument will be presented elsewhere, based on all field studies and theoretical reflections.

[Waiting for death: an analysis of the waiting list of the expertise centre for euthanasia]. / Wachten op de dood: een analyse van de wachtlijst van Expertisecentrum Euthanasie.

BACKGROUND: The waiting list of the expertise center euthanasia (EE) in the Netherlands for patients requesting euthanasia on the basis of psychiatric suffering has increased to two years in a short space of time. AIM: Clarity about the causes and direct consequences of the EE waiting list and an answer to the question: what now? METHOD: We analyzed the EE waiting list based on various media reports, annual reports from the EE and scientific studies. RESULTS: The EE waiting list arose because, on the one hand, the demand for euthanasia among patients with a mental illness has increased, while on the other hand, the willingness to perform euthanasia among psychiatrists appears to be declining. The reasons for both trends seem multifactorial. The direct consequence of the waiting list is that patients with a mental illness have less access to euthanasia, which in itself can also have harmful and protective consequences. CONCLUSION: The EE waiting list is the result of an increasing number of requests and an apparent decrease in psychiatrists' willingness to perform euthanasia. In response to this situation, roughly three ways forward are conceivable: first the mental health care sector can assign itself a more active role in the field of euthanasia, second a further demedicalisation of the end of life is possible, or third a choice can be an amendment to EE's referral procedure. All of these options have potential pros and cons.

[Coercion and urge from a care ethics perspective]. / Dwang en drang vanuit zorgethisch perspectief.

BACKGROUND: Coercion is much discussed topic in psychiatry. AIM: Presentation of an ethics of care perspective on coercion, focusing on the moral aspects of the relationship between care recipient and caregiver, and the prevention and reduction of coercion. METHOD: Clarification of the care-ethical aspects of the high and intensive care (HIC) model and discussion of the Compulsory Mental Health Care Act (Wvggz). RESULTS: In the HIC model, ethics of care underlies three cultural changes: from control to contact, from reactive to proactive, from individuality to solidarity. More than the older Bopz Act, the Wvggz pays attention to relational aspects of coercion, but the procedures endanger care contact. CONCLUSION: Ethics of care - in which the care relationship is the starting point - offers a perspective that is of great value to psychiatry. The development of HIC is a concrete example of this. The Wvggz emphasizes collaboration in care, but care contact is hindered in practice by a multitude of procedures.

[High and intensive care as a next step in the reduction of coercion]. / High en intensive care als een volgende stap in dwangreductie.

BACKGROUND: The high and intensive care (HIC) model provides a framework for acute admission wards and is being implemented since 2013 by all mental healthcare institutions in the Netherlands. AIM: To investigate how the HIC model has been implemented between 2014 and 2018 and how the implementation of the HIC model is associated to coercive measures. METHOD: Between 2014 and 2018, 79 audits were organized in two phases within 25 institutions to measure the degree of implementation of HIC using a model fidelity scale, the HIC monitor. HIC monitor scores were compared to data on coercion to determine the relationship between implementation of the HIC model and coercive measures. RESULTS: Scores on the HIC monitor increased over time, especially in terms of vision, hospitality and facilities. However, a third of wards scored lower on the HIC monitor in the second audit compared to the first audit. Institutions that score higher use less seclusion and use less forced medication. CONCLUSION: Progress in the implementation of the HIC model is visible and institutions that are further in the implementation of the HIC model apply less coercion. Securing implementation proves difficult. Attention should be paid to the national staff shortage and systematic evaluation of coercion.

[Towards a proactive psychiatric ethics: a care ethics perspective]. / Naar een proactieve psychiatrische ethiek: een zorgethisch perspectief.

Background Proactive psychiatry requires proactive psychiatric ethics. Aim To describe ethical considerations with regard to proactive psychiatry. Method Discussion of care ethics aimed at proactive psychiatric care. Results In this contribution, we plea for a proactive psychiatric ethics, stimulating and supporting healthcare professionals in working from a developmental and contextual perspective. We describe care ethics, and show that it is in line with the principles of proactive psychiatry. We address three issues related to the development of proactive psychiatry: the goals of care; identifying risk factors; and the division of responsibilities in mental healthcare. Conclusion Proactive psychiatric ethics can be useful in identifying and discussing ethical issues associated with proactive psychiatry and thus contribute to improving practice. Tijdschrift voor Psychiatrie 63(2021)2, 150-153.

[Whole-body donation in the Netherlands: Current regulations and suggestions for improvement]. / Lichamen voor onderwijs en wetenschap.

Whole-bodies, or human cadavers, are of great value for medical education and science. The process of body donation and its regulation is, however, questionable. The Dutch legal framework is not sufficient. For example, the collaboration of anatomy departments with industry is not covered by existing regulations. Also, it is unclear what should be done in case of unexpected findings. Moreover, consent in whole-body donation does not meet specific conditions for informed consent. It takes the form of 'broad consent', allowing for unspecified use of the bodies. A monitoring system concerning the use for a specific educational program or research falls is absent. Therefore, we propose to develop a Code of Conduct and an adequate system of monitoring.

Does high and intensive care reduce coercion? Association of HIC model fidelity to seclusion use in the Netherlands.

BACKGROUND: A new inpatient care model has been developed in the Netherlands: High and Intensive Care (HIC). The purpose of HIC is to improve quality of inpatient mental healthcare and to reduce coercion. METHODS: In 2014, audits were held at 32 closed acute admission wards for adult patients throughout the Netherlands. The audits were done by trained auditors, who were professionals of the participating institutes, using the HIC monitor, a model fidelity scale to assess implementation of the HIC model. The HIC model fidelity scale (67 items) encompasses 11 domains including for example team structure, team processes, diagnostics and treatment, and building environment. Data on seclusion and forced medication was collected using the Argus rating scale. The association between HIC monitor scores and the use of seclusion and forced medication was analyzed, corrected for patient characteristics. RESULTS: Results showed that wards having a relatively high HIC monitor total score, indicating a high level of implementation of the model as compared to wards scoring lower on the monitor, had lower seclusion hours per admission hours (2.58 versus 4.20) and less forced medication events per admission days (0.0162 versus 0.0207). The HIC model fidelity scores explained 27% of the variance in seclusion rates (p < 0.001). Adding patient characteristics to HIC items in the regression model showed an increase of the explained variance to 40%. CONCLUSIONS: This study showed that higher HIC model fidelity was associated with less seclusion and less forced medication at acute closed psychiatric wards in the Netherlands.

[Physician-assisted death in psychiatry]. / Euthanasie in de psychiatrie.

In recent years, more patients with psychiatric disorders are receiving physician-assisted death (PAD). In the Netherlands, since more than 25 years psychiatric suffering is seen as a legitimate reason for PAD, but an additional independent assessment is required. Scarce empirical research shows that patients who receive PAD on the basis of psychiatric suffering have long-standing and complex complaints. Among these patients, depression and personality disorders are relatively common. The ethical justification of PAD for patients with psychiatric disorders has been the subject of debate for decades. Decisions about competence and the irremediability of suffering are challenging and for many authors reason enough to reject PAD based on psychiatric suffering. Others regard the exclusion of all patients with mental disorders as unjust. Empirical research and ethical consideration are needed for better founded considerations and a more widely supported practice concerning patients with a mental disorder who request PAD.

[Moral case deliberation in complex euthanasia requests]. / Moreel beraad bij complexe euthanasieverzoeken.

Dealing with euthanasia requests can be a complex matter for a doctor. How to determine whether the due diligence criteria of the Dutch Euthanasia Act are met in cases that are not straightforward? We argue that moral case deliberation (MCD), methodically structured reflective discussions on concrete moral dilemmas, can provide support in dealing with complex euthanasia requests. In this article, we discuss a case that was talked about during a MCD (in particular the CURA method, where CURA stands for 'concentrating, postponing, reflecting and action') by a group of GPs and nurses who met in the context of a network for ambulatory palliative care.This was about an older patient with multiple chronic conditions who lost any prospects of quality of life.Among other things, it was examined whether requests could be 'well-considered' (one of the due diligence criteria) when the patients are in doubt as to when euthanasia should be carried out.The importance of recognising one's own emotions as a doctor and the quality of communication between patient and doctor were also considered.For that reason, we try to show that MCD can assist in making careful and well-considered decisions when determining a course of action in the case of complex euthanasia requests and can encourage collaborative learning processes.

Moral competence, moral teamwork and moral action - the European Moral Case Deliberation Outcomes (Euro-MCD) Instrument 2.0 and its revision process.

BACKGROUND: Clinical Ethics Support (CES) services are offered to support healthcare professionals in dealing with ethically difficult situations. Evaluation of CES is important to understand if it is indeed a supportive service in order to inform and improve future implementation of CES. Yet, methods to measure outcomes of CES are scarce. In 2014, the European Moral Case Deliberation Outcomes Instrument (Euro-MCD) was developed to measure outcomes of Moral Case Deliberation (MCD). To further validate the instrument, we tested it in field studies and revised it. This paper presents the Euro-MCD 2.0 and describes the revision process. METHODS: The revision process comprised an iterative dialogue among the authors as Euro-MCD-project team, including empirical findings from six Euro-MCD field-studies and input from European experts in CES and theory. Empirical findings contained perceptions and experiences of MCD outcomes among healthcare professionals who participated in MCDs in various settings in Norway, Sweden and the Netherlands. Theoretical viewpoints on CES, literature on goals of CES and MCD and ethics theory guided the interpretation of the empirical findings and final selection of MCD outcomes. RESULTS: The Euro-MCD 2.0 Instrument includes three domains: Moral Competence, Moral Teamwork and Moral Action. Moral Competence consists of items about moral sensitivity, analytical skills and virtuous attitude. Moral Teamwork includes open dialogue and supportive relationships and Moral Action refers to moral decision-making and responsible care. During the revision process, we made decisions about adding and reformulating items as well as decreasing the number from 26 to 15 items. We also altered the sentence structure of items to assess the current status of outcomes (e.g. 'now') instead of an assumed improvement over time (e.g. 'better') and we omitted the question about perceived importance. CONCLUSIONS: The Euro-MCD 2.0 is shorter, less complex and more strongly substantiated by an integration of empirical findings, theoretical reflections and dialogues with participants and experts. Use of the Euro-MCD 2.0 will facilitate evaluation of MCD and can thereby monitor and foster implementation and quality of MCD. The Euro-MCD 2.0 will strengthen future research on evaluation of outcomes of MCD.

Last-Minute Recovery of a Psychiatric Patient Requesting Physician-Assisted Death.

Physician-assisted death is becoming legal in an increasing number of jurisdictions, but psychiatric patients are often explicitly excluded. However, in some countries, including the Netherlands, physician-assisted death of psychiatric patients is allowed. This Open Forum describes a patient with schizophrenia and symptoms diagnosed as refractory musical hallucinations. The patient requested assistance in dying only to recover after a mandatory second opinion, where his complaints were recognized as intrusive thoughts and treated accordingly. This case is used to reflect on how to deal with uncertainty about physician-assisted death of psychiatric patients and to argue for implementation of a due-diligence procedure, such as the one proposed in the Dutch Psychiatric Association's recent guideline concerning this issue.

High and Intensive Care in Psychiatry: Validating the HIC Monitor as a Tool for Assessing the Quality of Psychiatric Intensive Care Units.

This study aims to validate the HIC monitor as a model-fidelity scale to the High and Intensive Care (HIC) model, a recently developed model for acute psychiatric wards. To assess the psychometric properties of the HIC monitor, 37 audits were held on closed inpatient wards at 20 psychiatric hospitals in the Netherlands. Interrater reliability, construct validity and content validity were examined. Our results suggest that the HIC monitor has good psychometric properties. It can be used as a tool for assessing the implementation of the HIC model on acute psychiatric wards in the Netherlands, and for quality assessment and improvement.

Developing an ethics support tool for dealing with dilemmas around client autonomy based on moral case deliberations.

BACKGROUND: Moral Case Deliberations (MCDs) are reflective dialogues with a group of participants on their own moral dilemmas. Although MCD is successful as clinical ethics support (CES), it also has limitations. 1. Lessons learned from individual MCDs are not shared in order to be used in other contexts 2. Moral learning stays limited to the participants of the MCD; 3. MCD requires quite some organisational effort, 4. MCD deals with one individual concrete case. It does not address other, similar cases (it is case based). These limitations warrant research into complementary ways of providing CES to healthcare professionals. Our research objective was therefore to develop a low threshold CES tool based on a series of MCDs on autonomy in long-term care. METHODS: We used a qualitative research design in which we analyzed the process and content of a series of MCDs, combined with reflections on the theoretical background of MCD. In total 28 MCDs (10 transcripts and 18 summary reports) were analyzed by means of a thematic content analysis. In various rounds of development, the results of the analysis were combined with theoretical reflections on CES. Consequently, the tool was evaluated in three focus groups and adjusted. RESULTS: The CES tool, called 'moral compass', guides the users through a series of six subsequent questions in order to methodically reflect on their concrete moral dilemma, in the form of a booklet of 23 pages. It combines a methodical element that encourages and structures a reflection process with a substantive element, including norms, values, options, strategies, and insights regarding dealing with client autonomy. CONCLUSION: By using data from a series of MCDs, combined with theoretical reflections on MCD, ethics support and moral learning, we developed a thematic, low-threshold CES tool that supports healthcare professionals in daily practice in dealing with moral questions regarding client autonomy. It integrates examples and insights from earlier MCDs on the same topic. The moral compass is not a replacement of, but can be used complementary to MCD. The feasibility and impact of the moral compass need to be investigated in an evaluative follow-up study. The methodology presented in this paper may be used to develop moral compasses on different topics in various healthcare organizations.

Quality of life in a broader perspective: Does ASCOT reflect the capability approach?

PURPOSE: Economic evaluation of services and interventions in care services tends to focus on quality of life(QoL) based on health-related measures such as EQ5D, with a major focus on health and functioning. The Capability Approach (CA) provides an alternative framework for measuring QoL and challenges some of the conventional issues in the current practice of measurement of QoL. The Adult Social Care Outcomes Toolkit (ASCOT) aims to measure social care-related QoL in a broad sense. This article investigates whether and, if so, how the ASCOT addresses issues put on the agenda by the CA. METHODS: Literature analysis concerning theoretical assumptions and arguments of CA and ASCOT. RESULTS: The Capability Approach (CA) puts three issues on the agenda regarding QoL. First, the focus of evaluation should not be on functioning, but on freedom of choice. Second, evaluation should be critical about adaptive preferences, which entail that people lower expectations in situations of limited possibilities. Third, evaluation should not only address health, but also other domains of life. Our analysis shows that freedom of choice is reflected in the response option 'as I want' in the ASCOT questionnaire. The problem of adaptive preferences is countered in the ASCOT by developing a standard based on preferences of the general population. Third, the ASCOT contains several domains of life. CONCLUSIONS: We conclude that the CA and the ASCOT contribute to the discussion on QoL, and that the ASCOT operationalizes core assumptions of the CA, translating the issues raised by the CA in a practical way.

A Descriptive Mixed-Methods Analysis of Sexual Behavior and Knowledge in Very Young Children Assessed for Sexual Abuse: The ASAC Study.

Child sexual abuse (CSA) is a worldwide problem with serious consequences. We hypothesized that worrisome sexual behavior and knowledge would frequently be reported in children assessed after CSA. We therefore investigated (A) what types of sexual behaviors and knowledge were reported by parents of young children assessed for CSA; (B) in what cases such behaviors and knowledge were worrisome; and (C) how such children responded verbally and non-verbally during child interviews. We conducted a mixed-methods study, including qualitative inductive content analysis and quantitative analysis. It included 125 children (76 boys, 60.8%; median age 3.3 years, age range 0-11), all involved in the Amsterdam sexual abuse case (ASAC) and examined for highly suspected (n = 71) or confirmed CSA (n = 54). We identified themes from (1) the parent reports: sexual behavior (e.g., self-stimulation, touching others, imitation of sexual acts), fears and anxiety with regard to sexuality, and sexual utterances (sexual slang, references to sexual acts); and (2) the child interviews: behavioral reactions (avoidance, distractive behaviors), emotional reactions (anger, aggression), and verbal reactions (conspicuous utterances, refusal to talk about specific subjects). In 37% of the children the sexual behavior was deemed worrisome or very worrisome. Clinicians who assess children for CSA are advised to focus in particular on sexual behavior problems and inappropriate sexual knowledge.

Psychosocial symptoms in very young children assessed for sexual abuse: A qualitative analysis from the ASAC study.

Child sexual abuse (CSA) is a worldwide problem with serious consequences. No recognizable symptom pattern for suspected CSA has yet been identified in very young children. We aim to investigate psychosocial symptoms in a sample of children with confirmed or strongly suspected CSA and the interpretations given to such symptoms by independent clinical experts. Secondly we examined whether experts were able to identify confirmed victims of severe CSA. A qualitative study including inductive content analysis of medical files and focus group discussions with independent experts on the interpretation of psychosocial symptoms was conducted. We included 125 children (76 boys, 60.8%, and 49 girls, 39.2%; median age 3.3 years; age range 0-11) who were involved in the Amsterdam sexual abuse case (ASAC) and had been examined for strongly suspected CSA. We identified four themes among the psychosocial symptoms: problems concerning emotions, behavior, toilet training, and development, whether or not associated with the daycare center or the perpetrator. Clinical experts identified signs of posttraumatic stress disorder (PTSD), regression in continence skills (not otherwise explained), and problems triggered by exposure to the perpetrator or the abuse location as concerning symptoms for CSA. Less concerning symptoms were designated as worrisome if they were numerous and there was no clear explanation for these symptoms. A clear symptom pattern was lacking and about half of the confirmed severe victims of CSA did not display any psychosocial problems. Therefore, it is difficult for experts to identify confirmed CSA victims. Thus, the assessment of suspected CSA should be over time and multidisciplinary.

Does Moral Case Deliberation Help Professionals in Care for the Homeless in Dealing with Their Dilemmas? A Mixed-Methods Responsive Study.

Health care professionals often face moral dilemmas. Not dealing constructively with moral dilemmas can cause moral distress and can negatively affect the quality of care. Little research has been documented with methodologies meant to support professionals in care for the homeless in dealing with their dilemmas. Moral case deliberation (MCD) is a method for systematic reflection on moral dilemmas and is increasingly being used as ethics support for professionals in various health-care domains. This study deals with the question: What is the contribution of MCD in helping professionals in an institution for care for the homeless to deal with their moral dilemmas? A mixed-methods responsive evaluation design was used to answer the research question. Five teams of professionals from a Dutch care institution for the homeless participated in MCD three times. Professionals in care for the homeless value MCD positively. They report that MCD helped them to identify the moral dilemma/question, and that they learned from other people's perspectives while reflecting and deliberating on the values at stake in the dilemma or moral question. They became aware of the moral dimension of moral dilemmas, of related norms and values, of other perspectives, and learned to formulate a moral standpoint. Some experienced the influence of MCD in the way they dealt with moral dilemmas in daily practice. Half of the professionals expect MCD will influence the way they deal with moral dilemmas in the future. Most of them were in favour of further implementation of MCD in their organization.

Palliative care in mental health facilities from the perspective of nurses: a mixed-methods study.

WHAT IS KNOWN ON THE SUBJECT?: Nurses play an important role in monitoring and supporting patients and their relatives at the end of life. To date, there is a lack of recent empirical research on the experiences of psychiatric nurses in providing palliative care to psychiatric patients who suffer from life-threatening physical co-morbidity. The limited literature available indicates that palliative care for psychiatric patients needs to be improved. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This explorative study is unique in offering an insight into current palliative care practice for psychiatric patients and showed that one in three nurses working in Dutch mental health facilities is involved in palliative care provision. Important elements of palliative care, i.e.: care domains, multidisciplinary approach, early recognition and family care are recognized by nurses. Moreover, in palliative care for psychiatric patients there is more attention for psychosocial and spiritual care compared to palliative care for patients without psychiatric disorders. Patient characteristics and little attention for palliative care within mental health facilities were found to hamper timely and adequate palliative care provision by nurses. WHAT ARE THE IMPLICATIONS FOR RESEARCH AND PRACTICE?: Educating psychiatric nurses about palliative care and close collaboration between physical and mental health care are crucial to address the palliative care needs of this vulnerable patient group. Since mental health care is increasingly provided ambulatory, the development of palliative care for psychiatric patients outside mental health facilities should be closely monitored. ABSTRACT: Introduction Recent empirical research on palliative care for psychiatric patients is lacking. Aim The aim of this study was to explore nurses' experiences with and identify barriers to providing palliative care to psychiatric patients in Dutch mental health facilities. Methods Mixed-methods; 137 nurses working in Dutch mental health facilities completed a survey. Nine participated in in-depth interviews. Results Thirty-six percent of nurses had experience with providing palliative care to psychiatric patients with physical co-morbidity in the past 2 years. Of all patients, 63% received physical care before death, 46% psychosocial care and 33% spiritual care. In 91% of all cases, care was provided by multidisciplinary teams. Patient characteristics and little attention to palliative care were barriers for timely and adequate palliative care. Discussion In palliative care for psychiatric patients, there is more attention for psychosocial and spiritual care compared to palliative care for patients without psychiatric disorders. Yet there are barriers to adequate palliative care provision. Implications for practice Educating psychiatric nurses about palliative care and close collaboration between physical and mental health care are crucial to address the palliative care needs of psychiatric patients. Since mental health care is increasingly provided ambulatory, palliative care for psychiatric patients outside mental health facilities should be closely monitored.

The importance of 'global meaning' for people rehabilitating from spinal cord injury.

STUDY DESIGN: Qualitative study. OBJECTIVES: To explore whether aspects of global meaning (that is, fundamental beliefs and life goals concerning core values, relationships, worldview, identity and inner posture) are associated with processes and outcomes in rehabilitation, as experienced by people with spinal cord injury (SCI). SETTING: People living in the community receiving outpatient rehabilitation in a Dutch rehabilitation center. METHODS: In-depth semi-structured interviews were conducted with 16 people with SCI. Interviews were analyzed using qualitative research methods: structural and provisional coding. RESULTS: Core values, relationships, worldview, identity and inner posture (that is, the way in which people relate to the facts of life) were associated with various processes and outcomes of rehabilitation. Elements of the rehabilitation process included motivation, regulation of emotion, making decisions and handling stress. Elements of the outcome of rehabilitation included physical functioning, emotional functioning, social functioning and subjective sense of meaning. The influence was positive, with the exception of one case in which worldview and inner posture were negatively associated with motivation. Besides that, respondents emphasized the importance of rehabilitation professionals attuning to their global meaning. CONCLUSION: All aspects of global meaning were positively associated with various processes and outcomes of rehabilitation. It is recommended that rehabilitation professionals are aware of the importance of global meaning to people with SCI and that they take people's fundamental beliefs and life goals into account.

Development and validation of a questionnaire assessing the perceived control in health care among older adults with care needs in the Netherlands.

PURPOSE: In response to the increased emphasis placed on older people's self-reliance in many welfare societies, we aimed to develop and validate a measurement instrument, assessing perceived control in health care among older adults with care needs. The target group consists of older people who live (semi-)independently and use professional health care, with or without informal care. METHODS: Phase I (development) of the study consisted of the construction of the instrument based on the input from a variety of stakeholders. Phase II (validation) entailed a quantitative study in a sample of 247 respondents selected from the Longitudinal Aging Study Amsterdam, to assess the instrument's construct validity (structural validity and hypotheses testing) and reliability (internal consistency). RESULTS: The questionnaire consists of 29 items, related to organizing professional care, communication with care professionals, health management in the home situation, planning (more) complex care in the future, and perceived support from the social network. Based on a factor analysis, we identified three subscales: (I.) 'perceived personal control in health care'; (II.) 'anticipated personal control regarding future health care'; and (III.) 'perceived support from the social network,' with internal consistencies varying from Cronbach's α = .71 to .90. Factor I was associated with mastery, self-efficacy, self-esteem (r = .31-.35) and factor III with social loneliness (r = -.42). Factor II correlated less strongly with mastery, self-efficacy, and self-esteem (r < .30). CONCLUSION: Our questionnaire revealed sufficient construct validity and internal consistency. The instrument provides a basis for further quantitative research regarding control, especially in relation to health care-related outcomes.