[The use of lived experiences among psychiatrists: a qualitative empirical exploration]. / Gebruik van ervaringskennis onder psychiaters; kwalitatieve empirische verkenning.

BACKGROUND: Psychiatrists generally make little use of lived experiences in addition to clinical and scientific knowledge, even while its use may make services more humane. AIM: This study aims to explore psychiatrists’ lived experience perspectives and their considerations when integrating the personal into the professional domain. METHODS: As part of a qualitative participatory research approach, peer supervision sessions were followed for 2 years and additional interviews and a focus group were organised which were then analysed thematically. RESULTS: The participating psychiatrists had three main considerations for using their own experiences in clinical practice: personal, professional and clinical relevance. We identified 11 facilitating and 9 hindering factors in working with lived experiences related to clinical practice. In addition to the high workload and responsibility as a practitioner, a barrier is the lack of experience and recognition of this as a type of knowledge within the profession, including misconceptions about possible harmful effects. Facilitating factors included the opportunity to share with peers, a warm working relationship with patients and being able to create openness and destigmatisation among colleagues. CONCLUSION: Psychiatrists appreciated the integration of lived experiences into the professional domain, even though still in its infancy. The peer supervision setting in this study was experienced as a safe space to share personal experiences with vulnerability and explore how they can harness lived experiences in the work context.

Making invisible care visible. Ethics and aesthetics of care in participatory arts practices in times of COVID-19.

The COVID-19 pandemic emphasises the importance of care for our societies, yet underscores the inferiority of relational caring practices. During this time, we studied the participatory work of artists working with older adults using participant observations, in-depth interviews and visual ethnography. In this article, we present a case study of one arts initiative, a theatre company engaging seniors in the Netherlands, using ethics and aesthetics of care as sensitising concepts. The findings reveal that this work can promote relational forms of care. This study makes visible how different forms of care can be identified in a participatory art project.

An observational study of distractions in the operating theatre.

Several studies have reported on the negative impact of interruptions and distractions on anaesthetic, surgical and team performance in the operating theatre. This study aimed to gain a deeper understanding of these events and why they remain part of everyday clinical practice. We used a mixed methods observational study design. We scored each distractor and interruption according to an established scheme during induction of anaesthesia and the surgical procedure for 58 general surgical cases requiring general anaesthesia. We made field notes of observations, small conversations and meetings. We observed 64 members of staff for 148 hours and recorded 4594 events, giving a mean (SD) event rate of 32.8 (16.3) h-1 . The most frequent events observed during induction of anaesthesia were door movements, which accounted for 869 (63%) events, giving a mean (SD) event rate of 28.1 (14.5) h-1 . These, however, had little impact. The most common events observed during surgery were case-irrelevant verbal communication and smartphone usage, which accounted for 1020 (32%) events, giving a mean (SD) event rate of 9.0 (4.2) h-1 . These occurred mostly in periods of low work-load in a sub-team. Participants ranged from experiencing these events as severe disruption through to a welcome distraction that served to keep healthcare professionals active during low work-load, as well as reinforcing the social connections between colleagues. Mostly, team members showed no awareness of the need for silence among other sub-teams and did not vocalise the need for silence to others. Case-irrelevant verbal communication and smartphone usage may serve a physical and psychological need. The extent to which healthcare professionals may feel disrupted depends on the situation and context. When a team member was disrupted, a resilient team response often lacked. Reducing disruptive social activity might be a powerful strategy to develop a habit of cross-monitoring and mutual help across surgical and anaesthetic sub-teams. Further research is needed on how to bridge cultural borders and develop resilient interprofessional behaviours.

Strategies for disseminating recommendations or guidelines to patients: a systematic review.

BACKGROUND: The aim of this systematic literature review was to assess what dissemination strategies are feasible to inform and educate patients about recommendations (also known as guidelines). METHODS: The search was performed in February 2016 in PubMed, Ebsco/PsycINFO, Ebsco/CINAHL and Embase. Studies evaluating dissemination strategies, involving patients and/or reaching patients, were included. A hand search and a search in the grey literature, also done in February 2016, were added. Searches were not restricted by language or publication type. Publications that referred to (1) guideline(s) or recommendation(s), (2) dissemination, (3) dissemination with patients/patient organisations and (4) dissemination to patients/patient organisations were included in this article. Criteria 1 AND 2 were mandatory together with criteria 3 OR 4. RESULTS: The initial search revealed 3753 unique publications. Forty-seven articles met the inclusion criteria and were selected for detailed review. The hand search and grey literature resulted in four relevant articles. After reading the full text of the 47 articles, 21 were relevant for answering our research question. Most publications had low levels of evidence, 3 or 4 of the Oxford levels of evidence. One article had a level of evidence of 2(b). This article gives an overview of tools and strategies to disseminate recommendations to patients. Key factors of success were a dissemination plan, written at the start of the recommendation development process, involvement of patients in this development process and the use of a combination of traditional and innovative dissemination tools. The lack of strong evidence calls for more research of the effectiveness of different dissemination strategies as well as the barriers for implementing a strategic approach of dissemination. CONCLUSION: Our findings provide the first systematic overview of tools and strategies to disseminate recommendations to patients and patient organisations. Participation of patients in the whole process is one of the most important findings. These findings are relevant to develop, implement and evaluate more (effective) dissemination strategies which can improve health care.

Living with moderate to severe renal failure from the perspective of patients.

BACKGROUND: Within healthcare, almost no attention is given to patients with moderate-to- severe chronic kidney disease, having a with GFR between 20 and 45 while the presumption exists that these patients already experience several problems in their lives during the course of their illness. METHODS: A team of academic researchers and a renal patient participated in a qualitative study. Individual interviews (n = 31) and focus groups (10 participants in total) with patients having moderate-to-severe chronic kidney disease were conducted to gain insight into their everyday problems. RESULTS: Participants mentioned several experiences that can be divided into physical, social, societal and psychological aspects as well as aspects related to healthcare. The most important findings, following under each of these categories are: 1) the experience of fatigue (physical aspects) 2) the search for acknowledgment of complaints/not enough attention given to complaints leading to overcompensation and secrecy (societal aspects) 3) work problems (societal aspects) and 4) the wish to control the disease but not receiving enough support for this (healthcare). Patients feel in general that healthcare professionals do not take them seriously in their complaints and problems. CONCLUSIONS: This study offers important new insights into an expanding group of patients having moderate-to-severe chronic kidney disease. Healthcare professionals should acknowledge their problems instead of ignoring or rejecting them and they should support patients in finding a way to deal with them. The assumptions of Personalised Care Planning could be used to support patients.

Moving Perspectives on Patient Competence: A Naturalistic Case Study in Psychiatry.

Patient competence, defined as the ability to reason, appreciate, understand, and express a choice is rarely discussed in patients with obsessive compulsive disorder (OCD), and coercive measures are seldom used. Nevertheless, a psychiatrist of psychologist may doubt whether OCD patients who refuse treatment understand their disease and the consequences of not being treated, which could result in tension between respecting the patient's autonomy and beneficence. The purpose of this article is to develop a notion of competence that is grounded in clinical practice and corresponds with the experiences of patients with obsessions and/or compulsions. We present a naturalistic case study giving both the patient's and the therapist's perspective based on in-depth interviews and a narrative analysis. The case study shows that competence is not merely an assessment by a therapist, but also a co-constructed reality shaped by the experiences and stories of patient and therapist. The patient, a medical student, initially told her story in a restitution narrative, focusing on cognitive rationality. Reconstructing the history of her disease, her story changed into a quest narrative where there was room for emotions, values and moral learning. This fitted well with the therapist's approach, who used motivational interventions with a view to appealing to the patient's responsibility to deal with her condition. We conclude that in practice both the patient and therapist used a quest narrative, approaching competence as the potential for practical reasoning to incorporate values and emotions.

Struggling Between Strength and Vulnerability, a Patients' Counter Story.

Currently, patients are expected to take control over their health and their life and act as independent users and consumers. Simultaneously, health care policy demands patients are expected to self manage their disease. This article critically questions whether this is a realistic expectation. The paper presents the auto-ethnographic narrative of the first author, which spans a period of 27 years, from 1985 to 2012. In total nine episodes were extracted from various notes, conversations and discussions in an iterative process. Each of these episodes was condensed around a 'critical moment' as perceived by the "self". The critical moments in the illness process vary between newly encountered problems with basic needs and mourning, to renewed strength and the desire to grow, embracing new situations. Being confronted with and living with a chronic illness involves periods of anxiety and self centredness alternating with strength and advocating the interests of peer-patients. These episodes of emotion, confusion and refinding a balance have a cyclic pattern. The narrative illustrates the vulnerability and dependency of a patient with a chronic disease. The discussion relates this to mainstream dominant views on patients 'in control of their own life'. The narrative illustrates, that the vulnerability and dependency of the patient are key factors to take into account in health care policy. The narrative provides a counter story, challenging current thinking in terms of strength, selfmanagement, patients' own control and independent role.

Stimulating program implementation via a Community of Practice: a responsive evaluation of care programs for frail older people in the Netherlands.

Evaluation is often used as a vehicle to improve program implementation. To evaluate the implementation of programs that provide care for frail older people a Community of Practice (CoP) was developed in the Netherlands. The purpose of this paper is to describe and reflect on the role of a CoP in the implementation of these programs. Using a responsive evaluation approach this study was based on interviews with participating stakeholders and transcripts of the CoP meetings with 13 professionals, project managers and patient representatives. Findings showed that CoP members had unanticipated concerns regarding the pro-active approach of the programs and older people not being open to receiving care. The heterogenic composition was appreciated and fostered learning. A social infrastructure was created for active learning inside and outside the CoP. We conclude that a CoP is a useful strategy as part of an evaluation aimed at improving program implementation. Lessons learned include the importance of creating ownership among CoP members by sharing responsibilities and paying attention to the heterogenic group composition and professional language spoken to involve all members.

Living with Parkinson's disease: priorities for research suggested by patients.

PURPOSE: To describe a study in which patients with Parkinson's disease (PD) were engaged to list priorities for research to complement the professionals' research agenda. METHOD: The study was conducted by researchers and people with PD or relatives. Interviews and focus groups were held to develop a research agenda from patients' perspectives. A questionnaire was completed by patients to prioritize the research topics. Voiceover group meetings and meetings with the advisory group were organized to obtain feedback on the research process and to deliberate the preliminary findings. Finally, dialog meetings were organized with stakeholders to discuss the agenda and to achieve a shared research agenda. RESULTS: Patients prioritized 18 research themes. Top priorities included fundamental research, research on medication, coping, family & relations and good care. Patients asked for applied and multidisciplinary research. Professionals and charitable funding bodies acknowledged the importance of such research but did not feel capable of judging such proposals. Patients furthermore asked for more attention to be paid to living with the illness in the here-and-now to complement fundamental research. CONCLUSIONS: The patients' research agenda can be used to match research with patients' needs and to adapt the clinical support of professionals to patients' wishes.

Goals of clinical ethics support: perceptions of Dutch healthcare institutions.

In previous literature, ethicists mention several goals of Clinical Ethics Support (CES). It is unknown what key persons in healthcare institutions see as main--and sub-goals of CES. This article presents the goals of CES as perceived by board members and members of ethics support staff. This is part of a Dutch national research using a mixed methods design with questionnaires, focus groups and interviews. Quantitative and qualitative data were analyzed and combined in an iterative process. Four main clusters of goals were found: 1) encouraging an ethical climate, 2) fostering an accountable and transparent organization, 3) developing professionalism and a final goal, overarching the previous three, 4) good care. Most important sub-goals of CES were: attention for ethical issues, raising awareness of ethical issues, fostering ethical reflection and supporting employees. The article ends with a discussion on the desirability to further operationalize the general goal of good care, the context-boundedness of our findings and the need to relate goals of CES to the features of organizational cultures to further improve the integration of CES in healthcare institutions.

The photo-instrument as a health care intervention.

The aim of this study is to describe how hermeneutic photography and one application of hermeneutic photography in particular, namely the photo-instrument, can be used as a health care intervention that fosters meaning (re-)construction of mental illness experiences. Studies into the ways how patients construct meaning in illness narratives indicate that aesthetic expressions of experiences may play an important role in meaning making and sharing. The study is part of a larger research project devoted to understanding the photostories that result from groups of psychiatric patients using the photo-instrument. Within a focused ethnography approach we employed a qualitative design of a single case study. Text analysis of photostories was combined with observational data. Data were analyzed using hermeneutic theory. Participant observations were used for triangulation and complementarity. The interaction and collaboration between health care professionals and patients in the context of a photo group emerged as core concept that underlies the photo-instrument. The interaction triggered a reframing of meaning in the patient's illness narrative that offered new perspectives on positive identity growth. The role of visualizing meaning in images was found to lend a dynamic power to the process and triggered a dialectic between real life circumstances and imagination played out in the context of situated action. The findings suggest that a positive reframing of meaning in illness narratives is facilitated by the photo-instrument.

A systematic review of the literature about competence and poor insight.

OBJECTIVE: Formally, incompetence implies that a patient cannot meet the legal requirements for informed consent. Our aim was to review the scientific literature on the relationship between competence and insight in patients with psychiatric disorders, how competence and insight are connected in these patients and whether there are differences in competence and insight among patients with different disorders. METHOD: A search in PubMed/Medline was performed. Articles were assessed on relevance criteria by two independent reviewers. Study design, population, variables, and outcomes were extracted. RESULTS: Seven articles were included on studies of psychiatric inpatients and outpatients and of psychotic and non-psychotic patients. All studies used the MacArthur Competence Assessment Tool (MacCAT). All studies but one found a strong correlation between poor insight and incompetence. Psychotic patients with poor insight are very likely to be incompetent, and psychotic patients with adequate insight are generally competent. One well-executed study showed that in non-psychotic disorders, however, another relationship emerges; competence and insight do not completely overlap in these patients. CONCLUSION: Most incompetent psychotic patients have poor insight, but non-psychotic patients with adequate insight were incompetent in a substantial number of cases. In sum: non-psychotic patients with adequate insight can be incompetent.

Enacting ethics: bottom-up involvement in implementing moral case deliberation.

In moral case deliberation (MCD), healthcare professionals meet to reflect upon their moral questions supported by a structured conversation method and non-directive conversation facilitator. An increasing number of Dutch healthcare institutions work with MCD to (1) deal with moral questions, (2) improve reflection skills, interdisciplinary cooperation and decision-making, and (3) develop policy. Despite positive evaluations of MCD, organization and implementation of MCD appears difficult, depending on individuals or external experts. Studies on MCD implementation processes have not yet been published. The aim of this study is to describe MCD implementation processes from the perspective of nurses who co-organize MCD meetings, so called 'local coordinators'. Various qualitative methods were used within the framework of a responsive evaluation research design. The results demonstrate that local coordinators work hard on the pragmatic implementation of MCD. They do not emphasize the ethical and normative underpinnings of MCD, but create organizational conditions to foster a learning process, engagement and continuity. Local coordinators indicate MCD needs firm back-up from management regulations. These pragmatic action-oriented implementation strategies are as important as ideological reasons for MCD implementation. Advocates of clinical ethics support should pro-actively facilitate these strategies for both practical and ethical reasons.

"Here's my dilemma". Moral case deliberation as a platform for discussing everyday ethics in elderly care.

Our study presents an overview of the issues that were brought forward by participants of a moral case deliberation (MCD) project in two elderly care organizations. The overview was inductively derived from all case descriptions (N = 202) provided by participants of seven mixed MCD groups, consisting of care providers from various professional backgrounds, from nursing assistant to physician. The MCD groups were part of a larger MCD project within two care institutions (residential homes and nursing homes). Care providers are confronted with a wide variety of largely everyday ethical issues. We distinguished three main categories: 'resident's behavior', 'divergent perspectives on good care' and 'organizational context'. The overview can be used for agendasetting when institutions wish to stimulate reflection and deliberation. It is important that an agenda is constructed from the bottom-up and open to a variety of issues. In addition, organizing reflection and deliberation requires effort to identify moral questions in practice whilst at the same time maintaining the connection with the organizational context and existing communication structures. Once care providers are used to dealing with divergent perspectives, inviting different perspectives (e.g. family members) to take part in the deliberation, might help to identify and address ethical 'blind spots'.

Client participation in moral case deliberation: a precarious relational balance.

Moral case deliberation (MCD) is a form of clinical ethics support in which the ethicist as facilitator aims at supporting professionals with a structured moral inquiry into their moral issues from practice. Cases often affect clients, however, their inclusion in MCD is not common. Client participation often raises questions concerning conditions for equal collaboration and good dialogue. Despite these questions, there is little empirical research regarding client participation in clinical ethics support in general and in MCD in particular. This article aims at describing the experiences and processes of two MCD groups with client participation in a mental healthcare institution. A responsive evaluation was conducted examining stakeholders' issues concerning client participation. Findings demonstrate that participation initially creates uneasiness. As routine builds up and client participants meet certain criteria, both clients and professionals start thinking beyond 'us-them' distinctions, and become more equal partners in dialogue. Still, sentiments of distrust and feelings of not being safe may reoccur. Client participation in MCD thus requires continuous reflection and alertness on relational dynamics and the quality of and conditions for dialogue. Participation puts the essentials of MCD (i.e., dialogue) to the test. Yet, the methodology and features of MCD offer an appropriate platform to introduce client participation in healthcare institutions.

Moral learning in psychiatric rehabilitation.

The purpose of this article is to illustrate moral learning in persons with a psychiatric disability who participated in a nursing intervention, called the photo-instrument. This intervention is a form of hermeneutic photography. The findings are based on a multiple case study of 42 patients and additional interviews with eight of them. Photo groups were organized within three settings of psychiatric services: ambulatory as well as clinical, all situated in the Netherlands. Data were analysed according to hermeneutic and semiotic principles. Two cases are presented. Findings show that voice and face are concepts that help to identify elements of moral learning in the rehabilitation process of persons with a psychiatric disability. During the process patients become more aware of their responsibilities towards themselves and others.

Organizing moral case deliberation experiences in two Dutch nursing homes.

Moral case deliberation (MCD) is a specific form of clinical ethics, aiming to stimulate ethical reflection in daily practice in order to improve the quality of care. This article focuses on the implementation of MCD in nursing homes and the questions how and where to organize MCD. The purpose of this study was to evaluate one way of organizing MCD in two Dutch nursing homes. In both of these nursing homes the MCD groups had a heterogeneous composition and were organized apart from existing institutional communication structures. As part of a naturalistic evaluation, systematic observations, interviews and focus groups were completed. The findings indicate that the heterogeneous composition and MCD meetings separate from existing structures have benefits. However, the participants also reported negative experiences. This gives rise to the question whether a mixed MCD group which meets separately is an effective way to embed MCD as an instrument for reflection on moral issues in daily practice. We conclude that there is no single answer to that question. In the end, the two implementation strategies (i.e. within existing communication structures and a mixed MCD group) can be complementary to each other.

Developing voice and empowerment: the first step towards a broad consultation in research agenda setting.

BACKGROUND: Although people with intellectual disabilities (ID) are increasingly consulted in research, participation in research agenda setting processes is limited. This is not surprising as their voice can easily be dominated in consultations with researchers. The aim of this article is to explore the potentials of enclave deliberation as a first step towards broad consultation in research agenda setting. METHOD: The research agenda setting process followed a responsive methodology, which is characterised by a cyclical and emergent design. Two persons with ID and one parent participated in the research team. Seven persons with ID and six parents were interviewed individually. Subsequently, 10 focus groups were organised with people with ID and four focus groups with parents. Also, a questionnaire was sent to parents. RESULTS: The process towards involvement of people with ID was characterised by several steps that guided enclave deliberation. First, stories of people were collected that reflected their intimate voice. Then, a political voice was further developed through dialogue and interaction in focus groups. This process resulted in a prioritised list of nine potential topics for research. CONCLUSION: The process of developing intimate voice and political voice can be regarded as a concretisation of enclave deliberation among disempowered groups. These steps are necessary to initiate a process towards establishing a broad consultation between different stakeholders about research on ID.

European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects.

OBJECTIVE: To develop recommendations to enable successful inclusion of the patient perspective in European League Against Rheumatism (EULAR)-funded scientific research projects. METHODS: The EULAR standardised operational procedures for guideline development were followed. A systematic literature review was presented during a first task force meeting, including 3 rheumatologists, 1 rheumatologist/epidemiologist, 2 allied health professionals, 2 representatives of arthritis research organisations and 7 patient representatives, resulting in 38 statements. A Delphi method was carried out to reduce and refine the statements and agree on a set of eight. Next, a survey among a wider group of experts, professionals and patient representatives (n=42), was completed. Feedback from this wider group was discussed at the second meeting and integrated in the final wording of the recommendations. Subsequently, the level of agreement of the group of experts (n=81) was re-evaluated. RESULTS: The project resulted in a definition of patient research partner and agreement on a set of eight recommendations for their involvement in research projects. These recommendations provide practical guidance for organising patient participation, capturing (1) the role of patient research partners, (2) phase of involvement, (3) the recommended number, (4) recruitment, (5) selection, (6) support, (7) training and (8) acknowledgement. CONCLUSION: Collaboration between patients and professionals in research is relatively new. Trials or effectiveness studies are not yet available. Nevertheless, it is possible to define recommendations for the inclusion of patients in research following a solid expert opinion based consensus process.