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Sarah AK Uthoff,1 Anna Zinkevich,1 Jens Boenisch,2 Stefanie K Sachse,2 Tobias Bernasconi,2 Anna L Brütt,1 Lena Ansmann1 1Department of Health Services Research, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany; 2Department of Special Education and Rehabilitation, University of Cologne, Cologne, GermanyCorrespondence: Sarah AK Uthoff, Department of Health Services Research, Carl von Ossietzky University of Oldenburg, Ammerländer Heerstraße 140, Oldenburg, 26129, Germany, Tel\Fax +494417984167, Email sarah.uthoff@uni-oldenburg.dePurpose: Many care settings are characterized by collaboration between a variety of stakeholders. People without natural speech who rely on augmentative and alternative communication (AAC) are often strongly dependent on the involved stakeholders and collaboration among them. Since collaboration can be challenged by many barriers, this study examines the impact of a complex intervention on collaboration in AAC care.Methods: In a quasi-experimental mixed methods intervention study which include AAC training, AAC therapy and case management, caregivers of AAC users were surveyed at 3 time points to assess collaboration and case management in the intervention versus comparison group. In addition, semi-structured focus group interviews were conducted with caregivers in the intervention group. Quantitative data were analyzed descriptively and by comparison of means. Qualitative data were analyzed using qualitative content analysis.Results: The Mann–Whitney U-test showed significantly better collaboration in the intervention group with stakeholders that are more actively involved in AAC care, such as schools (p=0.026) and residential or social facilities (p=0.010), but not with passive stakeholders such as health insurance companies. Most aspects of case management were rated significantly better in the intervention group (p< 0.001). The focus group results show mainly positive changes in collaboration with the active stakeholders, such as more commitment and openness toward AAC.Conclusion: The results show a positive impact of the intervention on the collaboration between stakeholders involved in AAC care – especially with active stakeholders. In particular, the organization of care and the accompanying case management by the AAC consultation centers seem to positively affect collaboration.Keywords: stakeholders, teamwork, mixed methods, focus groups, complex care

Anna Levke Brütt,1 Julia Luise Magaard,1 Sylke Andreas,1,2 Holger Schulz1 1Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany; 2Psychology Institute, Alps-Adria-University Klagenfurt, Klagenfurt, Austria Objective: Psychosomatic inpatient rehabilitation aims at promoting functioning in patients with mental disorders. Although generally effective, some patients do not benefit from this rehabilitation and suffer from symptoms as well as functional impairment. This study aimed to identify patient-reported factors influencing activity and participation outcomes.Subject and methods: Five focus groups with N=23 former psychosomatic rehabilitation inpatients were conducted. The discussions focused on facilitators and barriers of treatment outcome. The material was analyzed inductively according to qualitative content analysis. Categories were derived from the material.Results: Patients reported sociodemographic and clinical characteristics as well as personal factors, preparation before psychotherapy, and aspects of employment and health care as predictors of treatment success.Conclusion: A wide range of possible factors that influence the course of functioning from the patients’ perspective were determined. These factors can be assigned to the ICF conceptual model. Clinician and researcher perspectives may complement these factors. Keywords: activities of daily living, qualitative study, psychiatric rehabilitation, patient-centered care

Background: Demographic changes are leading to a rise in the demand for care services, with nursing homes (NHs) playing an increasingly important role in end-of-life care. Evidence suggests that NH residents at the end of life significantly benefit from hospice and palliative care and the implementation of advance care planning (ACP). In 2018, Germany passed a law to promote the implementation of ACP in NHs and to enable the refinancing of ACP services by the statutory health insurance funds. The present study aimed at assessing current hospice and palliative care structures, examining the implementation of ACP and identifying barriers to obtain approval for billing for ACP services under this specific legislative (§ 132 g SGB V)., Methods: As a part of the "Gut-Leben" project, the present study administered a cross-sectional quantitative survey in 2023 to evaluate hospice and palliative care structures, the implementation of ACP, and barriers to ACP approval in German NHs. A questionnaire was distributed to a random sample of N = 1,369 NH managers. Responses were analyzed using descriptive statistical methods., Results: N = 330 NH managers responded to the questionnaire (24.1% response). The majority described the end-of-life care structures in their region as rather good (77.7; n = 256), and very strong collaboration was reported with general practitioners (54.7%), physiotherapists (42.9%), and palliative care physicians (38.6%). Awareness of the legislative for ACP was reported by n = 201 NHs (64.4%), and 100 (50.3%) of these NHs had already obtained approval. The primary barriers to approval identified by 68 NHs included a lack of available staff (48.5%; n = 33) and a small facility size (27.9%; n = 19)., Conclusions: Although half of the NHs have implemented ACP, there is still a need to enhance awareness of the ACP legislative. These efforts should aim to reduce the existing barriers to approval, which could be achieved, for instance, by fostering collaboration between NHs or by cooperating with external ACP service providers., Competing Interests: Declarations. Ethics approval and consent to participate: The present study received a waiver from the local medical ethics committee of the Carl von Ossietzky Universität of Oldenburg (no. 2022–154). Since data was collected anonymously, consent to participate was not required. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests., (© 2024. The Author(s).)

Introduction: People with multiple sclerosis and gait impairment are particularly susceptible to facing restrictions in their participation. This study aims to investigate (a) which contextual factors within the framework of the International Classification of Functioning, Disability and Health (ICF) are relevant for participation from the perspective of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices, and (b) how these contextual factors shape the subjective facets of participation, including a sense of connection, efficacy and meaning, based on the social identity approach to health and well-being., Methods: We conducted a qualitative analysis on data gathered from four online focus group interviews, each involving four to six people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices (totalling N = 19), and 12 individual online interviews conducted with participants from the focus group interviews. The analysis followed the qualitative content analysis according to Kuckartz., Results: Mobility assistive devices such as walkers, manual wheelchairs and electric wheelchairs/scooters were seen as facilitators that enabled participation in various life situations and enhanced a sense of efficacy by promoting independence. Challenges were encountered in relation to architectural barriers, pathways, weather conditions, public transportation and the lack of integral accessibility to services and systems. Although instrumental support could ease participation, it was also associated with an impaired sense of efficacy. Attitudes, particularly developing an understanding of the experiences of people with multiple sclerosis and gait impairment from others' perspectives, were considered important but often lacking, and discriminatory attitudes were experienced. On the level of personal factors, acceptance of both the mobility assistive devices and the disease itself were seen as facilitators for maintaining involvement in life situations., Conclusions: This study extends the existing literature by shedding light on the interconnectedness of contextual factors within the ICF and various facets of perceived participation, including a sense of connection, efficacy and meaning. These findings provide valuable insights for stakeholders such as urban planners and policymakers in developing inclusive environments that enhance the overall quality of participation for people with multiple sclerosis and gait impairment., Patient or Public Contribution: This study reports on the lived experiences of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices. The research team stood in close exchange with project members of the German Multiple Sclerosis Society Lower Saxony, a group representing the interests of people with multiple sclerosis, to design and conduct the focus group interviews. The results from the focus group interviews were the basis for the design of a participatory future workshop in which people with multiple sclerosis and stakeholders involved in the healthcare process collaboratively developed recommendations for improving the provision of mobility assistive devices., Trial Registration: German Clinical Trials Register number: DRKS00025532., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Background: According to the Common-Sense Model of Illness Representations, illness beliefs, such as causal attributions, can influence the way people assess and cope with their illness and vice versa. To date, causal attributions in people with depressive symptoms have been studied mainly cross-sectionally, quantitatively and independently. The purpose of this study is to examine the causal attributions of people with depressive symptoms in terms of their stability over time, dependence on treatment experience, and differentiation of causal concepts., Methods: In a population-based prospective sample, people with at least mild depressive symptoms (PHQ-9 Score ≥ 5) were interviewed via telephone at T0 and twelve months later (T1). Causal attributions were assessed using the Brief Illness Perception Questionnaire. After the open responses were qualitatively analysed using a deductive-inductive approach, stability over time was assessed for causal attributions and concepts by comparing answers between the two time points. Subsequent exploratory quantitative analyses were conducted using chi-square tests, t-tests, and logistic regression analyses., Results: A total of 471 individuals (age M = 53.9, 53.6% female) with a mean PHQ-9 Score of 8.4 were included in the analyses. Causal attributions related to participants' social environment, workplace, and past are the most stable over time. However, individuals with and without a time-stable causal concept showed no differences in terms of sociodemographic characteristics, severity of depressive symptoms, risk of comorbidity, and treatment experiences. Overall, the causal concepts of people with depressive symptoms appear to be very diverse. Those with treatment experience (M = 2.21, SD = 0.80) named significantly more causal attributions compared to people without treatment experience (M = 1.98, SD = 0.81, t(471) = -3.060, p < 0.01). In addition, logistic regression analyses revealed that treatment-experienced respondents were more likely to attribute "childhood/youth/parental home" and "predisposition"., Conclusions: Our study reveals that people with treatment experience tend to report treatment-congruent causal attributions, such as childhood and family environment, as well as predisposition, more frequently. Understanding how causal attributions and concepts are formed and change can be helpful for addressing causal attributions in treatment. Future studies should take into account the benefits of employing qualitative survey methods for exploring causal attributions., (© 2024. The Author(s).)

Background: Previous investigations of multiple sclerosis (MS)-related healthcare have focused on utilisation of specific individual health services (e.g. hospital care, office-based neurologists) by people with MS (PwMS). Meanwhile, little is known about possible patterns of utilisation across health services and their potential differences across patient characteristics., Objective: To comprehensively analyse and identify patterns of MS-related health service utilisation and detect patient characteristics explaining such patterns., Methods: In 2021, we invited all PwMS insured by the largest insurance company in Lower Saxony, Germany, to take part in an online survey. We merged respondents' survey and health insurance claims data. We analysed MS-related health service utilisation and defined individual characteristics for subgroup analyses based on Andersen's Behavioural Model. We executed non-parametric missing value imputation and conducted hierarchical clustering to find patterns in health service utilisation., Results: Of 6928 PwMS, 1935 responded to our survey and 1803 were included in the cluster analysis. We identified four distinct health service utilisation clusters: (1) regular users (n = 1130), (2) assistive care users (n = 443), (3) low users (n = 195) and (4) special services users (n = 35). Clusters differ by patient characteristics (e.g. age, impairment)., Conclusion: Our findings highlight the complexity of MS-related health service utilisation and provide relevant stakeholders with information allowing them to tailor healthcare planning according to utilisation patterns., Competing Interests: The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: CT has received honoraria for consultation and expert testimony from Alexion Pharma Germany GmbH, and Roche Pharma GmbH. None of this interfered with the current report. PF has received speaker's fees and honoraria for advisory boards from Almirall, Bayer, Biogen Idec, BMS-Celgene, Coloplast, Genzyme, GW Pharma, Hexal, Janssen-Cilag, Novartis, Merck, Roche, Sanofi, Stadapharm and Teva. AS has no personal pecuniary interests to disclose, other than being the lead of the German MS Registry, which receives (project) funding from a range of public and corporate sponsors, recently including The German Innovation Fund (G-BA), The German Retirement Insurance, The German MS Trust, The German MS Society, Biogen GmbH, BristolMyersSquibb, Merck Health care Germany GmbH, Novartis Pharma GmbH and Roche Pharma AG. None resulted in a conflict of interest. The remaining authors declare that there is no conflict of interest., (© The Author(s), 2024.)

Introduction: Total hip arthroplasty (THA) is the treatment of choice for end-stage osteoarthritis of the hip. Management of THA differs between countries, and it is hypothesised that this can influence patients' expectations and self-efficacy. Using Chen's intervening mechanism evaluation approach, this study aims to explore how structure of care influences expectations and self-efficacy of patients undergoing THA, and how expectations and self-efficacy in turn influence outcome in terms of perceived physical function and satisfaction., Methods and Analysis: A mixed-methods study will be conducted in two German and two Dutch hospitals near the Dutch-German border. In the quantitative part, patients will complete questionnaires at three timepoints: preoperatively and at 3 and 6 months postoperatively. Data analysis will include multiple regression analysis and structural equation modelling. In the qualitative part, interviews will be held with patients (preoperatively and 3 months postoperatively) and healthcare providers. Analysis will be performed using structured qualitative content analysis., Ethics and Dissemination: The study is approved by the Institutional Review Boards of both Carl von Ossietzky University Oldenburg (2021-167) and University Medical Center Groningen (METc 2021/562 and METc 2021/601). The results will be disseminated in the international scientific community via publications and conference presentations., Trial Registration Number: The study is registered in the German Clinical Trials Registry (DRKS: DRKS00026744)., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Nursing home entry often marks the transition into the end-of-life. In 2018, Germany legally introduced reimbursement for advance care planning (ACP according to § 132 g SGB V) in nursing homes that applied for ACP approval to improve end-of-life care. The Gut-Leben project aims to evaluate the implementation and barriers of ACP in nursing homes in Germany, with a special focus on the federal state of Lower Saxony, and provide practical recommendations for further development of end-of-life care., Methods: This mixed-methods study spreads across five work packages (WP) over a three-year period. WP 1 will explore the approval process, implementation, and barriers to ACP in nursing homes. Data will be collected through a national postal survey in a random sample of n = 600. WP 2 will explore whether documented ACP reports are applicable as a data source for research (expecting up to 500 available ACP reports). In WP 3a and 3b, data on the ACP process will be collected in n = 15 approved nursing homes in Lower Saxony over a 12-months period. For WP 3a and WP 3b, data on ACP conversations (n = 600) and on end-of-life care paths (n = 300) will be collected by facilitators and nurses of the respective nursing homes. In WP 4, residents' characteristics upon entry and changes in these characteristics over the length of stay are analyzed, utilizing claims data from the AOK Lower Saxony (expected sample of about 100,000 people entering nursing homes over a 10-years period). WP 5 connects, interprets, and reflects on the findings from WP 1-4 through focus groups and individual interviews with facilitators, nursing staff, residents, relatives, and care providers. Within a participatory approach, a practice advisory board will be set up existing of personal of nursing homes and will be closely involved in the whole research process., Discussion: In summary, the Gut-Leben project provides insight into the implementation and barriers of ACP in nursing homes according to German legislation for the first time, including practitioners' and residents' perspectives. Insights will help the further development of ACP in Germany through practical recommendations based on quantitative and qualitative data., (© 2023. The Author(s).)

Introduction: To involve health service users in health care and health research priority setting, different methods exist. Which method is most suitable under which circumstances is unknown. We compared a postal Delphi survey and an in-person workshop to involve health service users in priority settings for rehabilitative care and research in Germany., Methods: One hundred and eighty-four former rehabilitants were randomly assigned to a postal Delphi survey (n = 152) or an in-person workshop (n = 32). Two hundred and seventy-six employees in rehabilitation were also invited to the Delphi Survey. The methodological comparison refers only to the sample of rehabilitants. Within each method, the participants agreed on the top 10 priorities for practice improvement and research in rehabilitative care. The priorities were compared descriptively. Participants' satisfaction was measured with the Public and Patient Engagement Evaluation Tool. The usability of both methods was compared based on the effort, time and material costs required for implementation., Results: Seventy-five former rehabilitants and 41 employees in rehabilitation completed both Delphi survey rounds. Eleven former rehabilitants participated in the in-person workshop. Priorities for practice improvement showed a high degree of overlap between both methods whereas research priorities differed greatly. Participants of the in-person workshop felt significantly better prepared, more listened to and more likely to feel that different views on the topics were discussed. Participants of the Delphi survey expressed difficulties in understanding all survey questions. The Delphi survey was more elaborate in preparation and implementation but caused lower material costs., Conclusion: The differences in research priorities between the two methods could be due to the different samples, differences in the individual interests of participants or differences in the prioritization process. In-person workshops seem to be more appropriate for complex topics, where clarifications of questions and deeper discussions are needed. Delphi surveys seem to be more suitable for easily understandable topics, larger sample sizes and when fewer financial resources are available., Patient or Public Contribution: The different study phases were supported by employees in rehabilitation and former rehabilitants (e.g., developing study documents, and interpreting results)., (© 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

The term health literacy (HL) comprises the handling of health information and disease-specific and generic self-management skills, especially relevant for patients with chronic conditions. Health care professionals (HCPs) should correctly identify patients' communication needs and their HL levels. Therefore, the aims of the study were (1) to determine inpatient medical rehabilitation patients' HL based on self-assessment, (2) to evaluate changes from admission to discharge, (3) to identify HCPs estimation of patients' HL, and (4) to compare the estimated patient HL by patients and HCPs. A combined cross-sectional and longitudinal study was conducted in an orthopedic rehabilitation center in Germany. The multidimensional Health Literacy Questionnaire (HLQ) was filled in by patients (admission, discharge). An adapted version was administered to HCPs ( n = 32) in order to assess HL of individual patients. Data from 287 patients were used for the longitudinal analysis, and comparison was based on n = 278 cases with at least two HL estimations. The results showed a significant increase in HL in five of nine scales with small effect sizes. Moreover, HCPs mostly provided higher scores than patients, and agreement was poor to fair. Differences between the HL estimation might lead to communication problems, and communication training could be useful.

Background: Involving patients and citizens in health care decision-making is considered increasingly important in Germany. Participatory structures have been implemented, especially in rehabilitative care. However, it is unknown whether and to what extent German patients and citizens want to participate in decisions that exceed their own medical treatment., Objective: This study aimed to survey participation preferences and associated factors of health service users in decisions regarding rehabilitative care at micro, meso and macro levels., Methods: A questionnaire was sent to 3872 former rehabilitants. We collected participation preferences using the Control Preference Scale or an adapted form. Possible influencing factors were examined using logistic regression models., Results: The response rate was 5.7% (n = 217). At all decision-making levels, joint decision-making was preferred. At the macro level, preferences for actively participating were the highest. Preferences were significantly interrelated between decision-making levels. At the micro level, an orthopaedic indication significantly decreased the desire for participation compared to psychosomatic indications (odds ratio = 0.44, p = .019)., Discussion: Participants wanted to be equally involved in decision-making as experts. Higher preferences for active participation at the macro level might be due to dissatisfaction with the current health care organisation and lack of trust in politicians. Compared to the general public, our study sample was older (73.3% between 50 and 69 years) and more often chronically ill-factors associated with increased participation preferences in the literature., Conclusion: Contrary to the identified preferences, participation opportunities in the German health care system are rare. Further research on participation preferences and structures that enable meaningful involvement are needed., (© 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.)