Challenges and care strategies associated with the admission to nursing homes in Germany: a scoping review

BACKGROUND: The admission to a nursing home is a critical life-event for affected persons as well as their families. Admission related processes are lacking adequate participation of older people and their families. To improve transitions to nursing homes, context- and country-specific knowledge about the current practice is needed. Hence, our aim was to summarize available evidence on challenges and care strategies associated with the admission to nursing homes in Germany. METHODS: We conducted a scoping review and searched eight major international and German-specific electronic databases for journal articles and grey literature published in German or English language since 1995. Further inclusion criteria were focus on challenges or care strategies in the context of nursing home admissions of older persons and comprehensive and replicable information on methods and results. Posters, only-abstract publications and articles dealing with mixed populations including younger adults were excluded. Challenges and care strategies were identified and analysed by structured content analysis using the TRANSCIT model. RESULTS: Twelve studies of 1,384 records were finally included. Among those, seven were qualitative studies, three quantitative observational studies and two mixed methods studies. As major challenges neglected participation of older people, psychosocial burden among family caregivers, inadequate professional cooperation and a lack of shared decision-making and evidence-based practice were identified. Identified care strategies included strengthening shared decision-making and evidence-based practice, improvement in professional cooperation, introduction of specialized transitional care staff and enabling participation for older people. CONCLUSION: Although the process of nursing home admission is considered challenging and tends to neglect the needs of older people, little research is available for the German health care system. The perspective of the older people seems to be underrepresented, as most of the studies focused on caregivers and health professionals. Reported care strategies addressed important challenges, however, these were not developed and evaluated in a comprehensive and systematic way. Future research is needed to examine perspectives of all the involved groups to gain a comprehensive picture of the needs and challenges. Interventions based on existing care strategies should be systematically developed and evaluated to provide the basis of adequate support for older persons and their informal caregivers. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12912-022-01139-y

Effectiveness of an individually tailored complex intervention to improve activities and participation in nursing home residents with joint contractures (JointConEval): a multicentre pragmatic cluster-randomised controlled trial

Objective: This study aims to examine the effects of the individually tailored complex intervention Participation Enabling Care in Nursing (PECAN) on activities and participation of residents with joint contractures. Design: Multicentre pragmatic cluster-randomised controlled trial. Setting: 35 nursing homes in Germany (August 2018–February 2020). Participants 562 nursing home residents aged ≥65 years with ≥1 major joint contracture (303 intervention group, 259 control group). Interventions: Nursing homes were randomised to PECAN (18 clusters) or optimised standard care (17 clusters) with researcher-concealed cluster allocation by facsimile. The intervention targeted impairments in activities and participation. Implementation included training and support for selected staff. Control group clusters received brief information. Primary and secondary outcome measures: The primary endpoint PaArticular Scales combined residents’ activities and participation at 12 months. The secondary outcome comprised quality of life. Safety measures were falls, fall-related consequences and physical restraints. Residents, staff and researchers were unblinded. Data collection, data entry and statistical analysis were blinded. Primary analyses were intention-to-treat at cluster level and individual level using a generalised mixed-effect regression model and imputation of missing data. Results: Primary outcome analyses included 301 intervention group residents and 259 control group residents. The mean change on the Activities Scale was −1.47 points (SD 12.2) in the intervention group and 0.196 points (SD 12.5) in the control group and −3.87 points (SD 19.7) vs −3.18 points (SD 20.8) on the Participation Scale. The mean differences of changes between the groups were not statistically significant: Activities Scale: −1.72 (97.5% CI −6.05 to 2.61); Participation Scale: −1.24 (97.5% CI −7.02 to 4.45). We found no significant difference in the secondary outcome and no effects on safety measures. Conclusion: The complex intervention did not improve the activities and participation of nursing home residents on the PaArticular Scales at 12 months. Current nursing conditions in Germany may hamper implementation

Effectiveness of a complex intervention to improve participation and activities in nursing home residents with joint contractures (JointConEval): study protocol of a multicentre cluster-randomised controlled trial DRKS-ID:DRKS00015185

BACKGROUND Nursing home residents are frequently affected by joint contractures, which impacts their participation and daily activities. A complex intervention, the Participation Enabling Care in Nursing (PECAN), was previously developed and pilot tested~to address their needs. Its effectiveness and safety will be evaluated in the present study. METHODS/DESIGN This multicentre cluster-randomised controlled trial will be conducted in 32 nursing homes spread over two regions of Germany. A total of 578 residents over 65 years old with joint contractures will be included. To compare the effect of the PECAN intervention with optimised standard care (usual care and an information session), randomisation will take place at a cluster level. The individually tailored intervention was designed using the biopsychosocial model in the International Classification of Functioning, Disability and Health (ICF) to reduce activity limitations and participation restrictions resulting from existing joint contractures by addressing barriers and by strengthening supportive factors on an individual level and an organisational level. The implementation strategy comprises a facilitators' workshop, a peer mentoring approach including a peer mentor visit and telephone peer counselling, an in-house information event, an information session for the nursing team and a training session on~collegial consultation for the facilitators. The in-house information event will also take place in the nursing homes of the control group. The primary outcome is the residents' participation and activities after 12 months of follow-up as assessed using the PaArticular Scales. The secondary outcome is the residents' quality of life. A cost-effectiveness analysis (costs per additional resident who experienced a decrease of ten points in the participation or activities subscale of the PaArticular Scales) and a cost-utility analysis (costs per additional quality adjusted life year) will be conducted. We will investigate barriers and facilitators in a comprehensive process evaluation. DISCUSSION We expect a clinically relevant improvement of participation and activities in residents with joint contractures. Our findings will provide important insights regarding participation in the situation of the affected individuals. TRIAL REGISTRATION DRKS, DRKS00015185 . Registered on 1 August 2018. Universal Trial Number U1111-1218-1555. Registered on 26 July 2018

Ethische Herausforderungen in der partizipativen Forschung reflektieren – eine praxisbezogene Handreichung für ethische Fallreflexionen in Forschungsteams

In der partizipativen Forschung sind empirische und normative Fragen oft so eng miteinander verknüpft, dass ein adäquater Umgang mit ihnen nur gelingt, wenn partizipativ forschende Wissenschaftler*innen eine kritisch-reflexive und ethische Haltung entwickeln. Angesichts des hohen Handlungsdrucks in der Forschungspraxis ist es entscheidend, sich intensiv mit herausfordernden und dilemmatischen Situationen auseinanderzusetzen. Die Arbeit an Fallbeispielen in einem geschützten Rahmen, wie von Banks und Brydon Miller (2019) empfohlen, erweist sich dabei als hilfreich und erkenntnisfördernd. Die PartGroup, bestehend aus wissenschaftlichen Forschenden im Rahmen des Netzwerks für partizipative Gesundheitsforschung (PartNet), hat sich in den vergangenen zwei Jahren dem Schwerpunkt der individuellen und kollegialen ethische Fallreflexionen gewidmet. Diese Initiative wurde theoretisch inspiriert von Erkenntnissen der empirischen Ethik (Leget et al. 2009), des dialogischen Prinzips (Freire 1996, 2000) und der Methodik des Action Learnings (McGill & Brockbank 2004). Infolgedessen hat die Arbeitsgruppe einen Leitfaden zur Reflexion ethisch herausfordernder Situationen entwickelt. Dieser Leitfaden soll Forschende mit unterschiedlichen Hintergründen methodisch unterstützen, ein tieferes Verständnis ethischer Dilemmata oder Spannungsfelder, mit denen sie in ihrer Arbeit konfrontiert werden, zu erlangen. Wie auch Guillemin und Gillam (2004) feststellen, rücken solche Reflexionsprozesse die Auseinandersetzung mit vielfältigen Erfahrungen und Perspektiven in den Mittelpunkt. Die Arbeitshilfe ist bewusst so gestaltet, dass sie nicht auf die Suche nach einer ‚richtigen Lösung‘ abzielt, sondern Handlungsalternativen aufzeigt und zur Anregung eines Perspektivwechsels ermutigen sollte. Die vorliegende Handreichung bietet zunächst eine Darlegung theoretischer Überlegungen zu ethischen Herausforderungen und Dilemmata in der partizipativen Forschung. Anschließend wird der Fokus auf den entwickelten Leitfaden zur kollegialen Fallreflexion und den dafür relevanten methodologischen Überlegungen gelegt. Dafür werden die sieben Schritte des Leitfadens detailliert und praxisnah erläutert und die Erstellung von Fallbeispielen diskutiert. Im abschließenden Kapitel wird auf die Möglichkeiten und Grenzen der Handreichung eingegangen.In participatory research, empirical and normative issues are often closely linked. To address such challenges adequately, participatory researchers need to develop a critical, reflective, and ethical attitude. Given the fast-paced environment and pressure in academic research, a thoughtful and responsible approach is crucial to navigate challenging and potentially dilemmatic situations. Working on case studies in a protected setting as a team, as recommended by Banks and Brydon Miller (2019), has been shown to be helpful. The initiative PartGroup, which largely consists of early career researchers within PartNet, an informal German network for participatory health research, has focused on developing a framework for individual and collegial ethical case reflections over the past two years. This project is inspired by ethical theory, as well as findings from empirical ethics (Leget et al. 2009), the dialogic principle (Freire 1996, 2000) and the methodology of action learning (McGill and Brockbank 2004). As a result, the group has developed guideline intended to lead research teams in participatory research projects through a process of reflection on ethically challenging situations. This practical guide is intended to provide methodological support for researchers from different backgrounds and disciplines to gain a deeper understanding of ethical dilemmas and challenges. As Guillemin and Gillam (2004) also note, such reflection processes focus on the examination of different experiences and perspectives. The guide is intentionally designed in a way that avoids directive recommendations. Rather than pointing readers to a supposedly ‚correct‘ strategy, it encourages them to identify alternative options, and to develop a change of perspective. Our guide opens with a presentation of theoretical considerations on ethical challenges and dilemmas in participatory research project. In the following section, the focus is placed on guidelines developed for collegial case reflections, and on the relevant methodological reflections. For this purpose, the seven steps used in the guidelines are explained in detail, and recommendations are given for their practical application, including the creation of case studies. The final chapter discusses the potentials and limitations of applying such a guideline to navigate ethical challenges in participatory research. Ke

PLK1 phosphorylates PAX3-FOXO1 the inhibition of which triggers regression of alveolar rhabdomyosarcoma

Pediatric tumors harbor very low numbers of somatic mutations and therefore offer few targets to improve therapeutic management with targeted drugs. In particular, outcomes remain dismal for patients with metastatic alveolar rhabdomyosarcoma (aRMS), where the chimeric transcription factor PAX3/7-FOXO1 has been implicated but problematic to target. In this report, we addressed this challenge by developing a two-armed screen for druggable upstream regulatory kinases in the PAX3/7-FOXO1 pathway. Screening libraries of kinome siRNA and small molecules, we defined PLK1 as an upstream-acting regulator. Mechanistically, PLK1 interacted with and phosphorylated PAX3-FOXO1 at the novel site S503 leading to protein stabilization. Notably, PLK1 inhibition led to elevated ubiquitination and rapid proteasomal degradation of the PAX3-FOXO1 chimeric oncoprotein. On this basis, we embarked on a preclinical validation of PLK1 as target in a xenograft mouse model of aRMS, where the PLK1 inhibitor BI 2536 reduced PAX3-FOXO1-mediated gene expression and elicited tumor regression. Clinically, analysis of human aRMS tumor biopsies documented high PLK1 expression to offer prognostic significance for both event-free and overall survival. Taken together, these preclinical studies validate the PLK1 - PAX3-FOXO1 axis as a rational target to treat alveolar rhabdomyosarcoma