BACKGROUND: Only 5% of rare diseases have an approved treatment available, therefore patients often utilise complementary and integrative medicines (CIMs) to help manage their condition. Limited high-quality evidence-based studies are available which support the effectiveness of CIM, as it is difficult to show that an outcome is a direct result of the CIM intervention and not due to bias. Patients and healthcare professionals must weigh up the evidence quality, safety, efficacy, practical logistics, and financial implications of utilising CIM for rare diseases. This study aimed to elucidate perspectives of stakeholders (individuals with rare diseases, carers, family members, CIM practitioners and healthcare professionals), on the usage of CIM for rare diseases across Northern Ireland.
METHODS: This was a mixed methods study. An online survey was open from January to February 2019 (n = 29 responses). Themes identified from the survey were then discussed with stakeholders in a semi-structured discussion workshop in March 2019.
RESULTS: A limited number of participants responded to the survey (n = 29). Some individuals with rare diseases reported CIM as effective in the management of their condition, in particular acupuncture, dietary supplements, herbal medicines, homoeopathy, hydrotherapy, kinesiology, mindfulness, pilates, reflexology, tai chi, and yoga. However, a number of respondents (n = 7) experienced a negative side effect from CIM. Workshop participants raised concerns over the lack of information available about CIM and rare disease. Both the survey and workshop identified inequality of access with participants reporting CIM to be expensive.
CONCLUSIONS: More information, high-quality research, and education about CIM are required for patients and healthcare professionals to help make informed decisions about the usage of CIM for rare diseases. Improved communication, information, and health and social care in general would help individuals be more confident and knowledgeable about therapeutic options in relation to their rare disease(s).
Nur für fünf Prozent der seltenen Erkrankungen existiert eine zugelassene Behandlung, weshalb Patienten häufig komplementäre und integrative Medizin (CIM) nutzen, um ihre Krankheit zu behandeln. Es liegen nur wenige qualitativ hochwertige evidenzbasierte Studien vor, die die Wirksamkeit von CIM stützen, da sich schwer nachweisen lässt, dass ein Behandlungsergebnis direkt durch die CIM-Intervention bedingt und nicht Folge einer Verzerrung ist. Patienten und Angehörige der Gesundheitsberufe müssen die Qualität der Evidenz, die Sicherheit und Wirksamkeit sowie praktische logistische Aspekte und die finanziellen Folgen der Anwendung von CIM bei seltenen Erkrankungen abwägen. Mit der vorliegenden Studie sollte die Perspektive der Betroffenen (Menschen mit seltenen Erkrankungen, Betreuungspersonen, Familienangehörige, CIM-Praktiker und Angehörige der Gesundheitsberufe) in Bezug auf die Anwendung von CIM bei seltenen Erkrankungen in Nordirland untersucht werden.Es handelte sich um eine Studie mit gemischten Methoden. Eine Online-Umfrage war von Januar bis Februar 2019 geöffnet (n = 29 Antworten). Die in der Umfrage ermittelten Themen wurden anschließend im März 2019 im Rahmen eines halbstrukturierten Diskussionsworkshops mit den Betroffenen erörtert.Eine begrenzte Anzahl von Teilnehmern antwortete auf die Umfrage (n = 29). Einige Personen mit seltenen Erkrankungen gaben an, dass CIM bei der Behandlung ihrer Erkrankung wirksam war, insbesondere Akupunktur, Nahrungsergänzungsmittel, pflanzliche Arzneimittel, Homöopathie, Hydrotherapie, Kinesiologie, Achtsamkeit, Pilates, Reflexologie, Tai Chi und Yoga. Einige Befragte (n = 7) berichteten jedoch über negative Nebenwirkungen der CIM. Die Workshop-Teilnehmer äußerten Bedenken in Bezug auf den Mangel an Informationen über CIM und seltene Erkrankungen. Sowohl in der Umfrage als auch im Workshop zeigte sich eine Ungleichheit beim Zugang zu CIM und die Teilnehmer berichteten, dass CIM teuer sei.Patienten und Angehörige der Gesundheitsberufe benötigen mehr Informationen, qualitativ hochwertige Forschung und Aufklärung über CIM, um fundierte Entscheidungen über die Anwendung von CIM bei seltenen Erkrankungen treffen zu können. Eine bessere Kommunikation, Information sowie gesundheitliche und soziale Versorgung im Allgemeinen würden zu mehr Selbstvertrauen und Wissen der Betroffenen über die therapeutischen Möglichkeiten im Zusammenhang mit ihrer seltenen Erkrankung beitragen.

\"If certain tensions are present, it affects everyone\": Multiple case study on processes of coercive measures. Abstract: Background: There is an urgent need to reduce coercive measures in psychiatric care. The interaction between patients, nursing staff and medical professionals influences the course of a coercive measure. Aim: The interaction before, during and after coercive measures will be described and compared from the perspectives of the parties involved in order to identify a potential for prevention and quality improvement. Methods: A multiple case study of three coercive measures was conducted, each consisting of interviews with three participants, case documentation, photos, and observation. The data material was analysed thematically with subsequent single-case and cross-case analysis. Results: The thematic analysis revealed three areas of tension: tension and relaxation, humaneness and dehumanisation, as well as safety and autonomy. The stage before coercion was characterised by interacting tensions and the influence of emotions and stress. In all cases, a verbal communication gap was present. During the coercive measure, the quality of interactions between patients and nurses determined their experience. After coercion, the impacts of the measure on the persons and their relationships as well as reflections were the focus. Conclusions: De-escalation techniques turn out to be a key issue, whereby special attention should be paid to emotional and nonverbal aspects in the future. The results underline the relevance of empathy and respect throughout the process for prevention as well as for quality of care. Debriefings of coercive measures should be conducted routinely.
Zusammenfassung: Hintergrund: Zwangsmaßnahmen (ZM) sind in der psychiatrischen Versorgung dringend zu reduzieren. Die Interaktionen zwischen Patient_innen, Pflegefachpersonen (PP) und ärztlichen Fachpersonen beeinflussen den Verlauf von ZM. Ziel: Die Interaktionen vor, während und nach ZM werden aus den Perspektiven der beteiligten Personen beschrieben und gegenübergestellt, um daraus Potential für Prävention und Qualitätsverbesserung zu erkennen. Methoden: Eine multiple Fallstudie zu drei ZM wurde durchgeführt, jeweils bestehend aus Interviews mit drei Beteiligten, Falldokumentation, Fotos und Beobachtung. Das Datenmaterial wurde thematisch analysiert mit anschließender Single-Case- und Cross-Case-Analyse. Ergebnisse: Drei Spannungsfelder zeigten sich: Anspannung und Entspannung, Menschlichkeit und Entmenschlichung sowie Sicherheit und Autonomie. Die Phase vor der ZM war geprägt durch wechselwirkende Spannungen und dem Einfluss von Emotionen und Stress. In allen Fällen lag eine verbale Kommunikationsstörung vor. Während der ZM bestimmte die Qualität der Interaktion zwischen PP und Patient_in deren Erleben. Nach der ZM standen Auswirkungen der ZM auf die Personen und Beziehungen sowie Reflexionen im Vordergrund. Schlussfolgerungen: Deeskalationstechniken erweisen sich als zentral, wobei künftig ein besonderes Augenmerk auf emotionale und nonverbale Aspekte gelegt werden sollte. Die Resultate bestätigen die Bedeutung von Empathie und Respekt während des gesamten Prozesses hinsichtlich Prävention und Pflegequalität. Nachbesprechungen zu erfolgten ZM sollten routinemäßig durchgeführt werden.

Advance Care Planning (ACP) in the US is complex due in part to a lack of a unified health care system, though more recent policy changes permitting reimbursement for ACP conversations offer some hope. One key barrier to ACP is public perceptions of ACP, made worse by a historical focus on messaging that is unappealing and does not meet people\'s need to focus on the present before contemplating the future. As we learn more about how to engage the public, there is also increasing recognition that the previous focus on making very specific decisions about the future needs to shift to a focus on preparing people for communication and decision making. Numerous programs exist for health care professionals to support meaningful explorations of goals, values, and preferences, and there is growing availability of resources to support this work, both in the community and health care setting. Further research is needed to understand the full complexity of ACP implementation and to identify person-centred outcomes to support high quality ACP.

BACKGROUND: There is an increase in hearing and visual impairments worldwide. Those affected have a reduced ability to participate in social contacts, mobility, and access to information. Until now, there have been no recommendations for Advanced Practice Nurses (APNs) in Switzerland to support this group of people in the autonomous organization of everyday life in their own homes.
OBJECTIVE: The aim of the study was to understand how people integrate their dual hearing and visual impairments into everyday life to derive recommendations for APNs to support individuals to manage their daily lives.
METHODS: Following the constructivist approach of grounded theory, guided interviews and a questionnaire survey with hearing and visually impaired persons (n = 46) over 70 years of age on independent daily living were conducted (concurrent embedded strategy). In addition, demographic data on age, gender, living situation, and use of assistive devices were analyzed.
RESULTS: Based on the results, a communication-based dynamic resilience model (CoRes) was developed. This article represents the third phase of the three-stage-model. Integration of altered hearing depends on resources and risk factors.
CONCLUSIONS: Advanced practice nurses can use recommendations from this research to actively help individuals and their families build resilience.

What Is an Acute COPD Exacerbation? Results of a Survey among Primary Care Physicians in the German-Speaking Part of Switzerland Abstract. Acute exacerbations have a relevant impact on morbidity and mortality in patients with chronic obstructive pulmonary disease (COPD), which is why prophylactic and early treatment have become indispensable. However, COPD exacerbations are significantly under-diagnosed, possibly due to linguistic discrepancies between physician and patient. The aim of this study was to disclose how exacerbations are perceived by the GPs (general practitioners) and their patients and what linguistic conventions they use. This survey showed that GPs and their patients quite often have a divergent notion a common of COPD exacerbations.
Zusammenfassung. Akute Exazerbationen haben einen erheblichen Einfluss auf die Morbidität und Mortalität von Patient_innen mit chronisch obstruktiver Lungenerkrankung (COPD), weshalb prophylaktische und frühzeitige Behandlungen unverzichtbar geworden sind. Allerdings werden COPD-Exazerbationen deutlich unterdiagnostiziert, was möglicherweise auf sprachliche Diskrepanzen zwischen behandelnder Ärztin/behandelndem Arzt und Patient_in zurückzuführen ist. Ziel dieser Studie war es, herauszufinden, wie COPD-Exazerbationen von Allgemeininternist_innen und ihren Patient_innen wahrgenommen werden und welche sprachlichen Konventionen dabei verwendet werden. Im Dezember 2021 wurden Online-Fragebögen per E-Mail an Hausärzt_innen mit einer Praxis in der Deutschschweiz verschickt. Von 2667 Fragebögen wurden insgesamt 197 (7,4%) vollständig ausgefüllt und konnten für die Analyse verwendet werden. Mit dieser Umfrage konnte die Hypothese bestätigt werden, dass zwischen Hausärztin/Hausarzt und Patient_in nur in begrenztem Mass ein gemeinsames Verständnis von COPD-Exazerbationen besteht.

OBJECTIVE: A next step in value-based healthcare (VBHC) is to use outcome information (OI) to inform patients about (personalized) outcomes of care in order to support decision-making processes. We aimed to explore multiple myeloma (MM) patients\' and caregivers\' views on communication of OI and (shared) decision-making (SDM).
METHODS: Focus groups with MM patients and caregivers. Main topics were experiences and needs with information provision, communication, decision-making, and use of OI. Focus groups were audiotaped, transcribed verbatim and analyzed in an iterative process by two researchers using open coding. Member checks were performed.
RESULTS: Two focus groups were held with 11 patients (91% male, M=71 years old) and 10 caregivers (89% partners). Information needs were different per moment in the disease trajectory and purpose. Patients were implicitly involved in decisions, but they were not always aware of options and no active weighing of values took place. Outcome information was mostly provided on an individual level, to monitor disease progression and initiate decisions about the need for changes in ongoing treatment regimens (follow-up treatment lines). Patients appreciated the current process of information provision and decision-making, but prefer more option awareness, a bigger role in decision-making and more OI to 1) weigh outcomes for decision-making; 2) get insight in their care trajectory; and 3) compare with other patients.
CONCLUSIONS: Participants were satisfied with information provision and decision-making, but they were only implicitly involved in decisions. Real world OI derived from VBHC improvement cycles for MM may fulfil MM patients\' and caregivers\' information needs and support treatment decision-making.

BACKGROUND: At the onset of the COVID-19 pandemic general practitioners complained about feeling uninformed and lacking a sufficient flow of information from the local health authorities. Secure instant messaging describes a digital, chat-based form of communication enabling ambulatory care providers to connect in real-time and share information across medial sectors. KomPan, a proof-of-concept study, established a secure instant messaging structure in two model regions in Germany to improve communication between general practitioners and local health authorities via an additional communication pathway. This paper presents results of a qualitative user survey.
METHODS: We recruited general practitioners (n = 43) and staff of local health authorities (n=10) in two Hessian model regions for using the secure instant messaging (SIM) app of the Famedly GmbH, starting in December 2020 (2nd COVID-19 wave). We asked participants to share their usage experiences after a usage time of multiple months. In guided telephone interviews, we primarily asked how communication between the two user groups had changed while using secure instant messaging. The interviews were transcribed verbatim and analysed using thematic analysis.
RESULTS: We conducted ten interviews with general practitioners and two with staff of the participating local health authorities. Using our SIM-based platform promoted professional exchange between general practitioners. In contrast, the app had little impact on communication between local health authorities and general practitioners. Opposing expectations and usage patterns of the two user groups, among other reasons, probably led to a reduced direct trans-sectoral communication via secure instant messaging.
CONCLUSIONS: Establishing local chat groups for general practitioners was welcomed, especially during the pandemic situation, to improve professional exchange while experiencing challenging working conditions. To use secure instant messaging effectively for trans-sectoral communication a more comprehensive approach seems to be needed, such as digitalisation of institutional communication structures and improved networks of local healthcare providers.

Uncertainty, fear to harm the patient, discomfort handling the discussion and lack of time are the most cited barriers to prognostic disclosure. Physicians can be reassured that patients desire the truth about prognosis and can manage the discussion without harm, including the uncertainty of the information, if approached in a sensitive manner. Conversational guides could provide support in preparing such difficult conversations. Communicating \'with realism and hope\' is possible, and anxiety is normal for both patients and clinicians during prognostic disclosure. As a clinician pointed out: \'I had asked a mentor once if it ever got easier. - No. But you get better at it.\'

BACKGROUND: General practitioners (GPs) are the first point of contact and they coordinate the care for multimorbid patients. This article discusses possible solutions for GPs\' needs and wishes regarding the support for non-medical issues, in particular social and legal tasks as well as the cooperation with already existing institutions.
METHODS: In the third study phase of a mixed-methods approach, two focus groups with eleven GPs from Berlin were carried out. The project is part of the NAVICARE project, funded by the federal Ministry of Education and Research. The focus groups were analyzed using the framework analysis.
RESULTS: GPs caring for multimorbid patients are often faced with non-medical patient needs and social consultation issues. They would like to receive support in these areas and want more cooperative care structures. They are largely unaware of existing offers by social institutions in their city districts. The designation of a fixed contact person in social institutions could improve communication and thus enable low-threshold access.
CONCLUSIONS: The GPs agree that there is a need for support with social and legal matters in general practice. The focus groups discussed already existing offers that GPs could use more frequently and how a cooperation with providers of social care could succeed. GPs in Berlin think that support and relief measures, in particular in the form of cooperation with institutions in the district that provide social and legal support, are both desirable and conceivable.

The paper\'s central focus is on the usefulness or not of taking established and well-tried and tested models of training into cultures with different social, political and clinical attitudes. Beginning with the author\'s description of necessary changes introduced to ensure the revival of her own institute, the Society of Analytical Psychology, the author goes on to explore issues relevant to different aspects of training in countries where the IAAP runs its own training, known as the \'Router Programmes\'. Here, analysts, teachers and supervisors visiting other cultures to offer their expertise may experience clashes in their views about the nature of the analytic attitude, not only with those they train but also amongst themselves.
L’accent central de cet article est la question de savoir s’il est heureux ou non d’importer des modèles de formation établis et qui ont fait leurs preuves dans des cultures qui ont des attitudes cliniques, sociales et politiques différentes. Commençant par la description par l’auteur de changements nécessaires introduits pour assurer le renouveau de son propre institut, la Society of Analytical Psychology, l’auteur poursuit en explorant des questions concernant différents aspects de la formation dans des pays ou l’AIPA fournit sa propre formation, que l’on appelle le Programme Router. Ici, les analystes, enseignants et superviseurs qui sont en visite dans les autres cultures pour apporter leur expertise peuvent faire l’expérience de conflits dans leurs perspectives sur la nature de l’attitude analytique, non seulement avec ceux qu’ils forment mais entre formateurs.
Das Hauptaugenmerk des Beitrages gilt der Zweckmäßigkeit oder Nichtzweckmäßigkeit etablierter und bewährter Ausbildungsmodelle in Kulturen mit unterschiedlichen sozialen, politischen und klinischen Einstellungen. Beginnend mit den Schilderung der notwendigen Veränderungen, die getroffen wurden, um die Wiederbelebung ihres eigenen Institutes, der Society of Analytical Psychology, zu bewirken, untersucht die Autorin anschließend Fragen, die für verschiedene Aspekte der Ausbildung in Ländern relevant sind, in denen die IAAP ihre eigene Ausbildung durchführt, bekannt als das sogenannte \'Router-Programme\'. Hier besuchen Analytiker, Lehrer und Supervisoren andere Kulturen, um ihr Fachwissen zur Verfügung zu stellen und erleben dabei Zusammenstöße ihrer Ansichten über die Art der analytischen Haltung nicht nur mit denen jener, die sie ausbilden, sondern auch untereinander.
L’articolo si focalizza sull’utilità o meno dell’importare modelli di formazione consolidati e testati all’interno di culture con diverse attitudini sociali, politiche e cliniche. Iniziando con la descrizione dell’Autrice dei necessari cambiamenti introdotti per garantire il rilancio del proprio istituto, la Società di Psicologia Analitica (SAP), l’Autrice prosegue esplorando temi relativi a diversi aspetti della formazione in Paesi dove la IAAP svolge la propria formazione, conosciuta come il Programma dei Routers. Qui, analisti, insegnanti e supervisori in visita ad altre culture per offrire la loro competenza, potrebbero avvertire conflitti nelle loro visioni sulla natura dell’attitudine analitica, non solo nei confronti di chi educano, ma anche tra loro stessi.
Внимание статьи обращено на полезность (или бесполезность) использования существующих хорошо апробированных тренинговых моделей в культурах с иными социальными, политическими и клиническими установками. Автор начинает с описания необходимых изменений, которые были внесены и оживили ее собственный институт the Society of Analytical Psychology. Затем она исследует вопросы, относящиеся к разным аспектам тренинга в странах, IAAP проводит свои обучающие «Рутерские Программы». Аналитики, преподаватели, супервизоры, приезжающие в другую культуру, чтобы предложить свою экспертизу, могут переживать столкновения своих взглядов на природу аналитической установки не только с убеждениями тех, кого они обучают, но и с коллегами по программе.
El foco central del artículo es sobre la utilidad o no, de llevar modelos de formación establecidos, y bien probados y testeados, a culturas con diferentes actitudes sociales, políticas y clínicas. Comenzando con la descripción de los cambios necesarios introducidos para asegurar la renovación de su propio instituto, la Sociedad de Psicología Analítica, la autora continúa explorando cuestiones relevantes a aspectos diferentes de la formación en países donde la IAAP conduce su propia formación, conocida como “Programas de Routers”. Aquí, analistas, docentes y supervisores que visitan otras culturas para ofrecer su experticia pueden experimentar confrontaciones con sus perspectivas sobre la naturaleza de la actitud analítica, no solamente con aquellos a quienes forman, sino también entre sí mismos.
文章的核心关注点是:对不同社会、政治、临床态度的文化中输入训练时的获益之处, 或者说关注的是如何在输入训练时不去用已经建构好的, 被反复实践试验的训练模型。作者先描述了那些为了让她的机构 (即分析心理学学会)可以保有新生力而作出的必要改变, 然后探索了IAAP在多个国家独立运行的训练, 即“行者项目”, 多方面的相关问题。这个项目中, 当分析师、教师、督导到访其它国家, 并提供他们的专业时, 可能会经历到与他们分析性态度不一致的冲突, 这些冲突不仅仅来自于他们所训练的人, 也来自他们自己内在。.