Theresia Krieger

DNVF Memorandum Partizipative Versorgungsforschung (Teil 1) Anna Levke Brütt, Sandra Borgmann, Eva Buchholz et al. Gesundheitswesen; 10.1055/a-2665-0028 Im oben genannten Artikel wurden mehrere Fehler in den Affiliationen 12, 13, 25 und 26 korrigiert. Die korrekten Affiliationen lauten: 12 BRCA-Netzwerk e.V. – Hilfe bei familiären Krebserkrankungen, Bonn, Germany 13 partieval – Vermittlung partizipativer Kompetenzen, Prozessbegleitung und Evaluation im Bereich Gesundheit GmbH, Aachen, Germany 25 Deutsche Multiple Sklerose Gesellschaft, Bundesverband e.V., Hannover, Germany 26 MS Forschungs- und Projektentwicklungs-gGmbH, Deutsches MS-Register, Hannover, Germany Die Korrektur wurde in der Online-Version ausgeführt am 18.02.2026. Article published online: 18 February 2026 © 2026. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/). Georg Thieme Verlag KG Oswald-Hesse-Straße 50, 70469 Stuttgart, Germany

Purpose: Breaking bad news (BBN) in pediatric oncology is emotionally complex and often poorly supported by training or guidelines. The OKRA-Compass, developed through participatory research, provides practical recommendations aiming to enhance BBN quality in German pediatric oncology settings. This paper aims to track insights into the everyday BBN routine. Methods: After 6 weeks implementing the OKRA-Compass in five pediatric oncology clinics, a focus group and written feedback captured user experiences. Using thematic analysis, researchers coded and analyzed data to assess perceived changes. The participatory approach included co-researchers, and findings were linked to the Compass’s Delphi-based theses for deeper insight. Results: Applying the OKRA-Compass revealed four key outcomes: (1) Considering BBN as a complex process, (2) addressing the multi-layered needs of BBN receivers, (3) encouraging new paths for shared decision-making, and (4) cultivating awareness of the needs of healthcare professionals. Interdisciplinary use enhanced preparation, communication, and emotional safety while highlighting the need for structured training and institutional anchoring of BBN practices. Conclusion: The OKRA-Compass supports high-quality, individualized BBN by structuring communication, fostering emotional attunement, and promoting shared decision-making. It enhances interdisciplinary collaboration and self-reflection among healthcare providers. Findings highlight its practical relevance, though broader evaluation is needed. The tool offers a promising framework for improving communication culture in pediatric oncology. This process demands a readiness to adapt, allocate resources, and invest in enhancing team communication skills.

Zusammenfassung: Patient:innen als zentrale Akteur:innen der Gesundheitsversorgung sollen sich aktiv in Versorgungsforschungsprozesse einbringen können. Auch weitere Stakeholder – etwa Fachkräfte aus der Versorgungspraxis – sind für einen umfassenden partizipativen Ansatz von Bedeutung. In diesem DNVF Memorandum stehen partizipative Ansätze im Kontext der Versorgungsforschung im Mittelpunkt. Zunächst werden die Charakteristika partizipativer Versorgungsforschung beschrieben und ihr Entwicklungsstand sowie ihre Institutionalisierung in Deutschland dargestellt. Dabei werden auch das Potenzial und die Vorteile partizipativer Versorgungsforschung beleuchtet. Schließlich widmet sich das DNVF Memorandum zwei Querschnittsthemen, die für die Weiterentwicklung besonders relevant sind: der theoretisch-konzeptionellen Fundierung sowie der Erforschung von Effekten und Wirksamkeit partizipativer Ansätze.

Background: Parkinson’s disease (PD) significantly impacts the health-related quality of life of affected individuals and their relatives. In order to support the affected individuals and their families in coping with PD, it is essential to offer comprehensive information about their experiences. A comprehensive understanding of their lived experiences with the disease, the healthcare system, applied self-management strategies and their needs is considered crucial for developing a PD support program. Therefore, we aimed to explore the lived experiences and support needs of individuals with PD and their relatives in Germany.Methods: This non-interventional, qualitative study conducted an explorative status quo and needs assessment. It generated knowledge through semi-structured focus groups and interviews with individuals with PD at various disease stages and their relatives. The interviews were digitally recorded, transcribed verbatim, and analysed using content analysis.Results: Fifty-two individuals with PD and 29 relatives participated in eight focus groups and 13 paired and 13 individual interviews. Four themes with corresponding subthemes emerged: (1) experiences, revealing individuals’ experiences around their diagnosis and with disease-specific care provision; (2) management support offers, clarifying who provides support and the type of support offered; (3) self-management, including comprehensibility, meaningfulness and manageability; and (4) future needs, differentiating between deficits and needs. Most participants expressed a sense of abandonment when obtaining self-management strategies and mastering their lives with PD, often referred to as ‘life 2.0’. They identified the lack of structured and adequate provision of information, system orientation and social awareness.Conclusions: In Germany, there is an urgent need for a comprehensive PD care program that addresses the needs of individuals with PD and their relatives from the start of their care trajectory. It could assist individuals in gaining a comprehensive understanding of the disease, obtaining self-management strategies, building a support network, and becoming experts in self-managing their disease. Moreover, it may positively influence their care trajectory and reduce burdens, such as overburdening, fear of progression, and health anxiety.Trial Registration: German Clinical Studies Register (https://www.drks.de/DRKS00030090, No. DRKS00030090, Date of registration: 15.12.2022).

Introduction In paediatric oncology, ‘breaking bad news’—BBN—like cancer diagnosis is perceived as particularly challenging. Enabling a trialogue between children with their relatives and health professionals requires profound communication skills. Lacking the skills, experience or adequate support tools might result in negative consequences for both paediatric oncologists as BBN transmitters and BBN receivers as children with cancer and their relatives. In contrast to oncology for adults, multiperspective studies that explore BBN experience and specific support needs are rare, especially in Germany. Systematically developed and practically piloted support instruments, which address the specific needs of paediatric oncology, are missing. Objective To systematically design and mature in practice an orientation compass for preparing, delivering and following up on BBN conversations in paediatric oncology—so-called Orientierungskompass zur Übermittlung schwerwiegender Nachrichten in der Kinderonkologie (OKRA). Methods and analysis OKRA is based on a QUAL-quant mixed study design, comprising two phases. Four groups will contribute (1) experts through personal experience (representatives for children receiving BBN and their parents), (2) medical care providers and representatives of national medical societies, (3) ambulant psychosocial/psychological support providers and (4) researchers. In phase 1, multiperspective knowledge is generated through a participatory group Delphi that involves in-depth interviews, focus group discussions and questionnaires. This process culminates in formulating theses for a high-quality BBN process (output phase 1). In phase 2, based on the theses, a pilot orientation compass is designed. Through iterative cycles with the participatory action research method, this instrument will be piloted in three paediatric oncological settings and consequently optimised. Ethics and dissemination OKRA was approved on 19 September 2023 by the ethics committee of the Medical Faculty of the University of Cologne (No. 23-1187). After project completion, the OKRA compass will be distributed to multidisciplinary paediatric oncology teams throughout Germany. Trial registration number DRKS00031691.

Objective: In addition to the common difficulties of ongoing trials, the COVID-19 pandemic posed several challenges to scientists worldwide and created an additional burden for vulnerable patient groups. In the nFC-isPO of individualised treatment for anxiety and depression in newly diagnosed patients with cancer caregivers (e.g. psycho-oncologists) reported elevated HADS scores in newly enrolled patients after the outbreak of the COVID-19 pandemic. Accordingly, the question arises whether the pandemic affected HADS scores. Therefore, stratified analyses by the time of enrolment (T1) were performed for patients with 12 months of care (T3). Methods: Patients with 12 months of care (N = 1,140) were analysed. A comparison within the regression discontinuity design according to the time points at which patients completed the baseline (T1) HADS questionnaire was conducted to examine differences between patients recruited before Q2/2020 (pre-pandemic) and after the coronavirus outbreak. Furthermore, mean HADS scores at T1 and T3 for all quarters during the study were compared. Results: Mean T1 and T3 HADS scores of patients with cancer during the pandemic are only slightly higher than those of the pre-pandemic group. No significant treatment effect was observed in either the pre-pandemic (p = 0.5495, Late = 1.7711) or the post-pandemic group (p = 0.9098, LATE=-0.2933). In contrast, the average local treatment effect in the post-pandemic group suggests a minimal decrease in HADS score in the predefined range and thus a positive treatment effect for isPO. Comparison of mean HADS scores at T1 and T3 did not show a large increase by pandemic-related timepoints, however, a decrease of approximately 2–3 points over each quarter at 12 months compared to baseline is observed. Conclusion: The existing nFC-isPO care is resilient to crisis and may counteract external influences such as the Corona pandemic. Accordingly, the pandemic had little influence on the fears of patients with cancer in the nFC-isPO. This emphasises that psycho-oncology is vital for the reduction of stress, anxiety and depression in patients with cancer. Trial Registration: The study was registered in the German Clinical Trials Registry on 30 October 2018 under the ID “DRKS00015326”.

Purpose: Receiving a cancer diagnosis significantly impacts patients’ lives, and how the bad news is delivered influences patients’ trajectory, psychosocial adjustment and openness to psycho-oncological support. We explored how patients’ experiences, reactions and preferences were when receiving the news and which optimization recommendations can be made. Methods: We conducted an exploratory qualitative study with patients who enrolled in the new integrated cross-sectoral psycho-oncological care programme ‘isPO’, being enrolled 12 months post-diagnosis. Data on the main issue (i.e. perception of the moment when the diagnosis is received) were collected via telephone interviews that were fully audiotaped and transcribed. Two independent coders conducted inductive content analyses using MAXQDA. Results: Out of 38 approached patients, 23 cancer patients with 13 different tumour entities participated. They had a mean age of 54.2 (SD 16.2); n = 17 (74%) were female. Three major themes with 14 corresponding subthemes emerged: (1) patients’ experiences with the bad news delivery, including setting, mode, preparation and perceived needs; (2) patients’ reactions to the bad news, such as shock, fear and helplessness, disbelief and denial, anger and feeling of injustice, thankfulness and depression; and (3) patients’ receiving preferences, including psycho-oncological support, addressing informational needs, needs-driven comprehensive support and a competent multidisciplinary support team. Conclusions: The quality of bad news delivery and addressing patients’ needs should be strongly considered by physicians. We recommend integrating patients’ perspective on the quality management processes of breaking bad news. For providing needs-centred high-quality care, applying existing guidelines and acquiring patient-centred communication skills are central.