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Background: Patient-centredness has become a central quality indicator for oncology care. Elements include shared decision-making, patient navigation and integration of psychosocial care, which impact patient-reported and clinical outcomes. Despite efforts to promote patient-centred care in Germany in recent decades, implementation remains fragmented. Further, research on patient experiences with cancer care and its determinants is limited. Therefore, this study examines which patient- and facility-specific factors are associated with patient-centred quality care delivery., Methods: A cross-sectional study was conducted among 1,121 cancer patients in acute treatment, rehabilitation, and aftercare for different cancer entities across Germany. A participatory developed questionnaire was used. Outcome measures were the quality of physician-patient interaction and provision of psychosocial care during acute care. Predictors comprised patient-specific characteristics and treatment facility-specific factors. Multiple linear regression and multivariate binary logistic regression analyses were performed. In addition, a content analysis of open-ended comments on the patients' overall cancer care needs was applied., Results: Multiple linear regression analysis showed recent diagnosis (β=-0.12, p = < 0.001), being male (β=-0.11, p = 0.003), and having a preference for passive decision-making (β=-0.10, p = 0.001) to be significantly associated with higher interaction quality, but not age, education and health insurance type. An overall low impact of patient characteristics on interaction quality was revealed (adj. R 2  = 0.03). Binary logistic regression analysis demonstrated the availability of central contact persons (OR = 3.10, p < 0.001) followed by recent diagnosis (p < 0.001), having breast cancer (p < 0.001) and being female (OR = 1.68, p < 0.05) to significantly predict offering psycho-oncological counselling to patients in acute care facilities. The availability of peer support visiting services (OR = 7.17, p < 0.001) and central contact persons (OR = 1.87, p < 0.001) in the care facility, breast cancer diagnosis (p < 0.001) and a higher level of education (p < 0.05) significantly increased the odds of patients receiving information about peer support in the treatment facility. Despite relatively satisfactory quality of physician-patient interactions in cancer care (M = 3.5 (± 1.1)), many patients expressed that better patient-centred communication and coordinated, comprehensive cancer care are needed., Conclusion: The findings reflect effective developments and improvements in cancer care and suggest that patients' social characteristics are less decisive for delivering patient-centred quality care than systemic factors surrounding the care facilities. They can serve to inform oncology care in Germany., (© 2024. The Author(s).)

Introduction: Self-help is an important complement to medical rehabilitation for people with chronic diseases and disabilities. It contributes to stabilising rehabilitation success and further coping with disease and disability. Rehabilitation facilities are central in informing and referring patients to self-help groups. However, sustainable cooperation between rehabilitation and self-help, as can be achieved using the concept of self-help friendliness in healthcare, is rare, as is data on the cooperation situation., Methods and Analysis: The KoReS study will examine self-help friendliness and cooperation between rehabilitation clinics and self-help associations in Germany, applying a sequential exploratory mixed-methods design. In the first qualitative phase, problem-centred interviews and focus groups are conducted with representatives of self-help-friendly rehabilitation clinics, members of their cooperating self-help groups and staff of self-help clearinghouses involved based on a purposeful sampling. Qualitative data collected will be analysed through content analysis using MAXQDA. The findings will serve to develop a questionnaire for a quantitative second phase. Cross-sectional online studies will survey staff responsible for self-help in rehabilitation clinics nationwide, representatives of self-help groups and staff of self-help clearinghouses. Quantitative data analysis with SPSS will include descriptive statistics, correlation, subgroup and multiple regression analyses. Additionally, a content analysis of rehabilitation clinics' websites will evaluate the visibility of self-help in their public relations., Ethics and Dissemination: The University Medical Center Hamburg-Eppendorf Local Psychological Ethics Committee at the Center for Psychosocial Medicine granted ethical approval (reference number LPEK-0648; 10.07.2023). Informed consent will be obtained from all participants. Results dissemination will comprise various formats such as workshops, presentations, homepages and publications for the international scientific community, rehabilitation centres, self-help organisations and the general public in Germany. For relevant stakeholders, practical guides and recommendations to implement self-help friendliness will derive from the results to strengthen patient orientation and cooperation between rehabilitation and self-help to promote the sustainability of rehabilitation processes., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Use of support and relief services for parents of children in need of care: Results of the FamBer observational study Abstract: Background: Parents of children in need of care in Germany can fall back on a variety of relief and support services. So far, however, there has been a lack of systematic studies and quantitative data on the use of such offers at the individual level of parents and other legal guardians. Aim: The study on the compatibility of care and work for parents with a child in need of care (FamBer; funding: Federal Ministry for Family Affairs, Senior Citizens, Women and Youth, Germany) examines the knowledge of relief and support services, their use and the perceived benefits of these offers. Methods: 1070 parents answered a multidimensional online questionnaire in the cross-sectional study that was developed based on the Kindernetzwerk Study 2 from 2013 and the German socio-economic panel (SOEP). In addition to descriptive analyses, group comparisons were carried out using Chi 2 , Mann-Whitney U or Kruskal-Wallis H tests. Results: 43 to 58% of parents are aware of the respective legal options for taking time off work, but only very few families make use of them. The other support offers differ significantly in terms of the level of knowledge and utilization; these vary primarily with the education of the parents and the care needs of the child. They assessed the used services for consultation and advice as only little helpful. Conclusions: Due to the study design, we cannot rule out that the findings are also based on personal characteristics of the parents and their living conditions. Nevertheless, a large number of problems (e.g. a lack of information, low using, ineffectiveness of support services) can be identified that need to be overcome.

Background: Oral health is an essential component of a person's general health and well-being. It is influenced by many factors. These include individual aspects such as oral health literacy and oral health behaviour. The aim of this study was to investigate the association between oral health literacy and behaviour with physical oral health., Methods: In this population-based cross-sectional study, data of 5510 subjects enrolled in the Hamburg City Health Study (HCHS) from 2016 to 2018 with a mean age of 62.1 years and 50.7% women were evaluated. Physical oral health was assessed using the 14-item Physical Oral Health Index (PhOX). A newly developed 10-item questionnaire based on the Oral Health Literacy Adult Questionnaire and the 5th German Oral Health Study were used to determine oral health literacy and behaviour., Results: The sum score of the 10 questions related to oral health literacy and behaviour significantly correlated with the PhOX sum score (r = 0.23; p < 0.001). An increase of one point in the total score of oral health literacy and behaviour was associated with an increase in the PhOX sum score of 1.45 points on average. This association decreased only marginally after integrating potential confounders such as age and education., Conclusion: Higher oral health literacy and better oral health behaviour are associated with better physical oral health. Oral health literacy and behaviour should be important targets in dental education to efficiently and sustainably improve the oral health of the general population., (© 2023. The Author(s).)

Background: Studies in Germany have shown that susceptible groups, such as people with a migration background, have poorer oral health than the majority of the population. Limited oral health literacy (OHL) appears to be an important factor that affects the oral health of these groups. To increase OHL and to promote prevention-oriented oral health behavior, we developed an evidence-based prevention program in the form of an app for smartphones or tablets, the Förderung der Mundgesundheitskompetenz und Mundgesundheit von Menschen mit Migrationshintergrund (MuMi) app., Objective: This study aims to describe the development process of the MuMi app., Methods: For the description and analysis of the systematic development process of the MuMi app, we used the intervention mapping approach. The approach was implemented in 6 steps: needs assessment, formulation of intervention goals, selection of evidence-based methods and practical strategies for behavior change, planning and designing the intervention, planning the implementation and delivery of the intervention, and planning the evaluation., Results: On the basis of our literature search, expert interviews, and a focus group with the target population, we identified limited knowledge of behavioral risk factors or proper oral hygiene procedures, limited proficiency of the German language, and differing health care socialization as the main barriers to good oral health. Afterward, we selected modifiable determinants of oral health behavior that were in line with behavior change theories. On this basis, performance objectives and change objectives for the relevant population at risk were formalized. Appropriate behavior change techniques to achieve the program objectives, such as the provision of health information, encouragement of self-control and self-monitoring, and sending reminders, were identified. Subsequently, these were translated into practical strategies, such as multiple-choice quizzes or videos. The resulting program, the MuMi app, is available in the Apple app store and Android app store. The effectiveness of the app was evaluated in the MuMi intervention study. The analyses showed that users of the MuMi app had a substantial increase in their OHL and improved oral hygiene (as measured by clinical parameters) after 6 months compared with the control group., Conclusions: The intervention mapping approach provided a transparent, structured, and evidence-based process for the development of our prevention program. It allowed us to identify the most appropriate and effective techniques to initiate behavior change in the target population. The MuMi app takes into account the cultural and specific determinants of people with a migration background in Germany. To our knowledge, it is the first evidence-based app that addresses OHL among people with a migration background., (©Marie-Theres Weil, Kristin Spinler, Berit Lieske, Demet Dingoyan, Carolin Walther, Guido Heydecke, Christopher Kofahl, Ghazal Aarabi. Originally published in JMIR Formative Research (https://formative.jmir.org), 11.05.2023.)

Background: Quality of life (QoL) of people with dementia (PwD) is an important indicator of quality of care. Studying the impact of acute hospital settings on PwD's QoL requires assessment instruments that consider environmental factors. Until now, dementia-specific QoL instruments have not yet demonstrated their feasibility in acute hospitals because their use takes up too much time or their validity depends on observation periods that usually exceed the average length of hospital stays. Therefore, validated instruments to study QoL-outcomes of patients with dementia in hospitals are needed., Methods: Data stem from a study that analyzed the impact of a special care concept on the QoL of patients with dementia in acute hospitals. Total sample size consisted of N = 526 patients. Study nurses were trained in using an assessment questionnaire and conducted the data collection from June 2016 to July 2017. QoL was assessed with the QUALIDEM. This instrument consists of nine subscales that can be applied to people with mild to severe dementia (N = 344), while six of the nine subscales are applicable for people with very severe dementia (N = 182). Scalability and internal consistency were tested with Mokken scale analysis., Results: For people with mild to severe dementia, seven out of nine subscales were scalable (0.31 ≤ H ≤ 0.75). Five of these seven subscales were also internally consistent (ρ ≥ 0.69), while two had insufficient reliability scores (ρ = 0.53 and 0.52). The remaining two (positive self-image, feeling at home) subscales had rather low scalability (H = 0.17/0.16) and reliability scores (ρ = 0.35/0.36). For people with very severe dementia, all six subscales were scalable (0.34 ≤ H ≤ 0.71). Five out of six showed acceptable internal consistency (ρ = 0.65-0.91). Only the item social relations had insufficient reliability (ρ = 0.55)., Conclusions: In comparison with a previous evaluation of the QUALIDEM in a long-term care setting, the application in a hospital setting leads to very similar, acceptable results for people with mild to severe dementia. For people with very severe dementia, the QUALIDEM seems to fit even better in a hospital context. Results suggest either a revision of unsatisfactory items or a general reduction to six items for the QUALIDEM, for all PwD. In general, the QUALIDEM can be recommended as instrument to assess the QoL for PwD in the context of hospital research. Additionally, an investigation of the inter-rater reliability is necessary because the qualification of the nurses and the length of stay of the patients in the hospital differ from the previous investigations of the inter-rater reliability of QUALIDEM in the nursing home., (© 2023. The Author(s).)

Purpose: This study aims to assess whether cancer-specific knowledge (CSK) is associated with membership in a cancer peer support group (PSG) and other factors., Methods: A cross-sectional study investigated the CSK of 1121 cancer patients of various entities across Germany. CSK was measured with the BCKS-14, a 14-item knowledge instrument which was previously participatory developed with patient representatives and oncologists. Associations between CSK and PSG membership, sociodemographic factors, internet use, and preferences in medical decision-making were analysed with t-tests and multiple linear regressions., Results: The t-test showed a statistically significant difference in CSK between members and non-members of PSGs. Knowledge for PSG members was on average 0.97 points higher (p < 0.001) and varied between 2 and 14 points compared to 0-14 points for non-members. Regression analysis revealed age, gender, time since diagnosis, education, internet use, and PSG activity to be statistically significant predictors. Younger (β =  - 0.15; p < 0.001), female (β = 0.10; p = 0.001), higher educated patients (β = 0.27; p < 0.001) with and a diagnosis longer ago (β = 0.10; p = 0.002) who use the internet frequently for information seeking (β = 0.20; p ≤ 0.001) and members of cancer PSGs (β = 0.18; p ≤ 0.001) showed a higher CSK., Conclusion: Overall, CSK of the participants shows a high degree of variance. CSK should be promoted for all patients and especially for older, newly diagnosed patients with low educational levels and PSGs introduced early on as they contribute to improving CSK among other benefits., (© 2022. The Author(s).)

Background: Peer support is increasingly recognized as crucial for improving health and psychosocial outcomes in oncological care. The integration of cancer self-help groups (SHGs) into cancer care facilities has gained importance in recent years. Yet, there is a lack of knowledge of the extent and quality of cooperation between cancer care facilities and SHGs and their integration into routine care. The concept of self-help friendliness (SHF) provides a feasible instrument for the measurement of cooperation and integration., Methods: A cross-sectional study across Germany investigates the experiences of 266 leaders of cancer SHGs concerning their cooperation with cancer care facilities based on the criteria for SHF. The participatory study was developed and conducted with representatives of the House of Cancer Self-Help and the federal associations of cancer self-help., Results: According to the SHG leaders, about 80% of their members primarily find their way to an SHG via other patients and only less than 50% more or less frequently via hospitals or rehabilitation clinics. The quality of cooperation with cancer centres, hospitals and rehabilitation clinics, however, is rated as good to very good by more than 70% of the respondents. Nine out of 10 quality criteria for SHF are fully or at least partially implemented, the values vary between 53% and 87%. Overall, 58% of the SHG leaders feel well to be very well integrated into care facilities., Conclusions: The results show a positive assessment of the involvement of SHGs in oncological care, but differences between inpatient and outpatient care and low referrals to SHGs are prominent. The concept of SHF is a feasible solution for a systematic and measurable involvement of SHGs., Patient or Public Contribution: The perspectives and insight of patient representatives obtained through qualitative interviews were directly incorporated into this study. Representatives of cancer self-help organizations were involved in the development of the questionnaire, reviewed it for content and comprehensibility, and further helped to recruit participants., (© 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Objective: Large-scale population-based studies regarding the role of education in periodontitis are lacking. Thus, the aim of the current study was to analyze the potential association between education and periodontitis with state of the art measured clinical phenotypes within a large population-based sample from northern Germany., Material & Methods: The Hamburg City Health Study (HCHS) is a population-based cohort study registered at ClinicalTrial.gov (NCT03934957). Oral health was assessed via plaque-index, probing depth, gingival recession and gingival bleeding. Periodontitis was classified according to Eke & Page. Education level was determined using the International Standard Classification of Education (ISCED-97) further categorized in "low, medium or high" education. Analyses for descriptive models were stratified by periodontitis severity. Ordinal logistic regression models were stepwise constructed to test for hypotheses., Results: Within the first cohort of 10,000 participants, we identified 1,453 with none/mild, 3,580 with moderate, and 1,176 with severe periodontitis. Ordinal regression analyses adjusted for co-variables (age, sex, smoking, diabetes, hypertension and migration) showed that the education level (low vs. high) was significantly associated with periodontitis (OR: 1.33, 95% CI: 1.18;1.47)., Conclusion: In conclusion, the current study revealed a significant association between the education level and periodontitis after adjustments for a set of confounders. Further research is needed to develop strategies to overcome education related deficits in oral and periodontal health., (© 2022. The Author(s).)

Background: Nowadays, much hope and expectations are associated with digitization in the health sector. The digital change also affects health-related self-help. A nationwide survey of self-help organizations (SHOs) aimed to show chances and limitations in the use of interactive IT tools like webforums, online meetings or social media as well as digital infrastructures for their organizational management. In this survey, we also determined whether SHO staff themselves have support and qualification needs with regard to this topic., Design: The online survey was conducted between 14 November and 8 December 2019, i.e., immediately before the outbreak of the Covid-19 pandemic. The questionnaire consisted of 50 questions consisting of 180 single items which could be answered in 30-40 min. After two reminder letters, 119 questionnaires of the SHOs were gathered and analysed., Results: SHOs already have a lot of experience with digital media/tools (e.g., own homepage, social media, cloud computing). Some tools are attested a "high" or "very high" benefit by more than 80% of users. Perceived benefits, however, are also facing a number of problems, ranging from lack of resources to data protection issues. Despite, or even because of the limits of digitization, there is great desire and need for support and further training in SHOs (and self-help groups)., Conclusions: At many points in the survey it was shown that digital media can be a useful extension of "traditional" collective self-help. Taking into account the risks and limitations associated with digital tools, SHOs can be central stakeholders in digitization in health-related self-help., Patient or Public Contribution: The study was financially supported by the Federal Ministry of Health, Germany. A detailed representation of the results is publicly available at: https://www.uke.de/dish., Competing Interests: Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2022.)

Background: Managing multiple sclerosis (MS) includes different treatment approaches. Rehabilitation is a key strategy in MS for improving functioning, activity and participation. As part of a larger study on overall patient experiences with different treatment approaches, this study aims to give an overview of different patients' experiences and perspectives on inpatient rehabilitation in MS., Methods: We conducted problem-centered interviews in 50 persons with MS in Germany, of whom most had relapsing-remitting MS. We used the maximum variation sampling method during recruitment. Data were analyzed thematically., Results: As a result of the analysis, three major themes were identified: 1) factors contributing to the decision-making concerning rehabilitation, 2) experience with the rehabilitation setting, 3) benefits of rehabilitation treatments. The treating physicians' attitude had a major impact on the decision to either opt for rehabilitation or not. Setting goals prior to rehabilitation was given a high priority. Exchanging experiences with other persons with MS presented a major benefit from rehabilitation while for some being separated from regular daily life resulted in a more ambiguous attitude ranging from appreciation of escaping daily hassles to substantial behavioral change management., Conclusion: Patients reported various experiences in the process of decision-making with regard to rehabilitation. Physicians´ advice, goal setting and the selection of the most suitable rehabilitation clinic were considered most relevant., (© 2022. The Author(s).)

Background: Persons with Multiple Sclerosis (pwMS) follow individual strategies to cope with this highly heterogeneous disease. As surveys show, lifestyle habits play an important role in pwMS. However, little is known about individual experiences of pwMS with different lifestyle adjustment strategies., Objective: This study aims to describe and understand individual experiences of pwMS with lifestyle adjustments., Methods: Semi-structured interviews were conducted with 50 pwMS in Germany. Criteria for inclusion were age ≥ 18 years and a diagnosis of relapsing-remitting Multiple Sclerosis. Data were analyzed inductively and deductively according to a six-step thematic analysis., Results: The three main themes for experience-based lifestyle adjustments were: 1) nutrition and supplements, 2) exercise and physical activity, and 3) stress management. Influencing factors on the decision-making process such as active disease management, information and advice, desire for mental health and social support, and the wish for self-determination were identified. Impacts of starting or maintaining lifestyle habits included, for example, MS-specific, general, and mental health benefits, the development of coping strategies, social support, and barriers that led to a termination of lifestyle adjustments., Conclusion: This study provides a rich and nuanced amount of experiences of pwMS with lifestyle adjustments and leads to three important conclusions: 1) Further research is warranted to better describe the perceived effects of lifestyle habits on MS symptoms and progression, in particular with regard to nutrition and stress reduction; 2) patient education in MS should include the available evidence on lifestyle management and 3) patients need to be actively supported in changing their lifestyle behavior., Competing Interests: AS has received funding from Roche and salaries for talks from Novartis. CH has received research grants, congress travel compensations, and salaries for talks from Biogen, Genzyme, Sanofi-Aventis, Bayer Healthcare, Merck, Teva, Roche, and Novartis. IK has received speaker honoraria and travel funding from Bayer, Biogen, Novartis, Merck, Sanofi Genzyme, Roche; speaker honoraria from Mylan; travel funding from the Guthy-Jackson Charitable Foundation; consulted for Alexion, Bayer, Biogen, Celgene, Chugai, IQVIA, Novartis, Merck, Roche; and received research support from Chugai, Diamed. SEW, KRL, CK, JS, SA, and SS declare having no competing interests. This commercial funding does not alter our adherence to PLOS ONE policies on sharing data and materials.

Introduction: The worldwide migration movement is growing and thereby challenging the health care systems of immigration countries like Germany to make health care equally accessible for all people. Due to their low oral health status and low uptake rates of dental treatment and prevention, migrants were detected as a vulnerable group. Data regarding dental care access barriers of this group is limited. Therefore, the following study established a deeper understanding of unknown access barriers., Methods: Nine expert interviews and one focus group interview were conducted semi-structured via interview guideline in the period of August until October 2018. The experts were persons with strong vocational interactions and experiences with the sector oral health care and migration. The focus group participants had a Turkish migration background., Results: The expert and focus group interviews revealed a variety of barriers that exist toward dental treatment and prevention for migrants. Language, perceived significance of oral health, oral health knowledge, health socialization and patient-dentist interaction were detected to be the main barriers with underlying subthemes and interactions. Furthermore, a predominantly not precaution-oriented dental service utilization of migrants was underlined by the interviewees. Additionally, ways to reach a higher cultural sensitivity in oral health care were stated., Conclusion: With respect for research, there is a need for the integration of migrant-specific items when collecting health data from people. With respect for policy, there is a need for more structural and individual attention for promoting equal access to oral health care and prevention measures for people with a migrant background., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Spinler, Kofahl, Ungoreit, Heydecke, Dingoyan and Aarabi.)

Background: In a healthcare system which aims to empower the patient, self-management becomes increasingly important. In Multiple Sclerosis, an effective self-management is associated with various favorable health-related outcomes like improvement in quality of life, the reduction of depression and anxiety symptoms, and reduced healthcare costs. This study investigates the association between the Big Five personality traits and self-management including activity in self-help groups., Methods: People with MS were recruited via several paths within Germany (e.g. medical practices, social events and the German MS society). The final study sample consisted of 682 participants who answered a multidimensional questionnaire. This comprised the Big-Five-Inventory-10 for personality, the Health Education Impact Questionnaire (heiQ) for self-management competencies, questions for participation in self-help groups, and socio-demographic and clinical variables., Results: Multivariate regression analyses showed that personality could explain a greater amount of variance of self-management than socio-demographic and clinical variables. Neuroticism was the strongest predictor and correlated negatively with all heiQ-dimensions of self-management. In contrast, in logistic regression analysis none of the Big Five traits became significant in predicting the activity in self-help groups., Conclusion: As expected, personality plays an important role regarding self-management. Ideally, a time-saving personality assessment should be considered in routine clinical practice to identify patients at risk; however, at a minimum, personality traits should be considered in consultations with their neurologists. They may need help to understand the benefits of effective self-management and should receive support to improve their self-management skills and to reduce their neuroticism to lower the risk of secondary complications., (Copyright © 2022 Elsevier B.V. All rights reserved.)

Objective: Empowerment is critical for cancer patients to make informed choices, to manage medication, and to navigate through the oncological care system. Cancer peer support provides patients with information, emotional relief and may promote empowerment. This paper provides a systematic review of the literature examining the impact of cancer peer support interventions on psychological empowerment., Methods: PubMed, Web of Science, CINAHL, Cochrane Library, PsycINFO and PSYNDEX databases were systematically searched from inception until December 2020. We included quantitative studies, published in English or German, which examined peer-led cancer support interventions and their impact on the three components of psychological empowerment (intrapersonal, interactional and behavioural) among participating cancer patients., Results: Database searches and screening of relevant reference lists identified 2336 potentially relevant articles. A total of 29 studies were included in the review. Active coping, self-efficacy and knowledge were the most prominent dimensions of empowerment in these studies. The majority of studies revealed that peer support led to a small to medium, significant increase in psychological empowerment, and was associated with further patient-reported benefits., Conclusions: The existing evidence suggests a weak to moderate, positive association between cancer peer support and the three components of psychological empowerment among cancer patients. Peer support groups should be seen as an important element in cancer care and clinical practice and, thus, be more systematically involved in cancer care., (© 2022 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Background: A variety of management options (e.g., disease-modifying therapy, lifestyle interventions, rehabilitation) are available for persons with relapsing-remitting multiple sclerosis (MS). Besides coping with the diagnosis, persons with MS have to make complex decisions, e.g., regarding disease-modifying therapies. In addition to factual information, reports of patient experiences may support other patients in their decision-making. Therefore, we developed a website presenting patient experiences illustrated by video, audio and text files. This study aimed to test the acceptability and usability of a website with patient experiences with MS., Methods: A mixed-methods approach was applied. A total of 69 participants visited the German "Patient Experiences with MS (PExMS)" website and among them, 50 persons with MS and 6 experts completed an online survey. In total, 18 participants took part in telephone interviews or focus groups. Data from the survey were analysed using descriptive statistics. Qualitative data were analysed using thematic analysis., Results: Both quantitative and qualitative responses suggest that the PExMS website was viewed positively by patients and experts. 94% of persons with MS agreed that the information was comprehensible and reliable. 54% felt encouraged to share their health problems with others after having studied the website. 74% claimed to use the website if they had to make a decision regarding their health. Qualitative responses deduced from the website fell into 5 key themes: (1) web design, appearance, and functionality, (2) content, (3) usability, (4) satisfaction, and (5) loyalty. The search for persons of similar age and with comparable experiences was a major driving force to navigate the website. The material on the website was perceived as diverse, covering both positive and negative experiences in daily living with MS. All participants greatly appreciated having access to other people's experiences online and judged the material on the website as particularly helpful in decision-making for disease-modifying therapies., Conclusions: The findings suggest that the PExMS website might have the potential to be a useful source of audio-visual information for persons with MS. Given the lack of websites available to patients with experiential information, health care professionals may be encouraged to routinely inform patients about this website at regular appointments., (© 2022. The Author(s).)

Objectives: Current oral health literacy (OHL) instruments vary in focus, methodology, administration time and burden. The widely used word recognition tests fail to encompass important OHL domains, while others exceed time frames for use in practical settings, require an interviewer or mainly measure self-assessments. This paper describes the development of the Oral Health Literacy Profile (OHLP), introduces its components and evaluates the psychometric properties of its two core modules, the knowledge tests., Methods: A preliminary version of the questionnaire was developed and assessed for content validity, relevance and redundancy by an expert panel. It was tested in a convenience sample (n = 95) leading to the creation of a 28-item questionnaire, which was afterwards tested in a second convenience sample (n = 193). Item difficulty, discrimination, internal reliability and construct validity were assessed for the oral health knowledge (OHK) and dental health system knowledge (DHSK) modules., Results: The items showed acceptable range of difficulty (ideal: 7 items; easy: 5 items; and difficult: 3 items) and good to very good discriminatory power (the point-biserial index (PBI) > 0.30: all items). Construct validity was considered to be fulfilled when 75% of the hypotheses of expected group differences were met. Satisfactory internal reliability was observed., Conclusion: With all its components, the OHLP is a suitable short instrument to assess the most relevant dimensions of the multifaceted construct of OHL., Practice Implication: The OHLP can be widely used in research, especially suitable in practical settings, and thereby identify patients who may benefit from oral health education., (© 2021 The Authors. Community Dentistry and Oral Epidemiology published by John Wiley & Sons Ltd.)

Background: Besides coping with a disease with many uncertainties, people with relapsing-remitting multiple sclerosis face complex decisions concerning disease-modifying therapies (DMTs). In an interview study, we aimed to assess patients' experiences with DMTs., Methods: Problem-centred interviews were conducted with 50 people with relapsing-remitting multiple sclerosis in Germany using maximum variation sampling and covering all licensed DMTs. Data were analysed thematically using deductive and inductive categories., Results: 47 of 50 patients had treatment with at least one of the approved DMTs. The main themes were: (1) starting a DMT, (2) switching to another DMT, (3) discontinuing a DMT, and (4) multiple sclerosis without starting a DMT. Different intercorrelated factors influenced the decision-making processes for or against a DMT. Individual experiences with DMTs in daily life contained the effort in administration, success, and failure of DMTs, coping strategies and well-being without DMTs. The decision-making process for or against a DMT and the use of those treatments can be understood as a constant, continually shifting process, complicated by different factors, which change over time. Experiences with DMTs were characterized by attempts to handle uncertainty and to (re)gain control and integrate adaptivity into one's life., Conclusions: The study provides a rich and nuanced amount of patients' experiences with DMTs. The findings demonstrate the importance for practitioners to look at current life circumstances of patients with multiple sclerosis when recommending a DMT and to promote and enable patients to make informed decisions., (© 2021. The Author(s).)

Background: First investigations indicate a migration background of residents in Germany as a discrete risk factor for poor oral health. A lower level of oral health literacy among people with a migration background is considered a reason worthy of being investigated., Aim: This article presents results on oral health literacy and oral health gained from the MuMi study (promoting oral health and oral health literacy of people with a migration background)., Methods: The oral health and oral health literacy as well as the sociodemographics of patients with and without migration background were examined in 40 dental surgeries in Hamburg, Germany. Associations between migrant status, oral health, and oral health literacy were analyzed with logistic regressions. Potential confounders were gradually integrated into the multivariate analyses., Results: Patients with and without a migration background differed significantly in oral health literacy and clinical parameters of oral health (approximal plaque index and degree of caries restoration). The logistic regression analysis revealed highly significant associations between migration background, oral health literacy, and oral hygiene, while also accounting for education and socioeconomic status., Discussion: Migration background constitutes a discrete risk factor for lower oral health and oral health literacy for these relevant population groups. This fact needs stronger reflection in further research and political decision-making in order to promote equality of oral health opportunities., (© 2021. The Author(s).)

Background: There is a lack of studies investigating the impact of postponed dental visits due to financial constraints on quality of life., Aims: The aim of this study was to identify whether these factors are associated longitudinally., Methods: Data were derived from waves 5 and 6 of the "Survey of Health Ageing and Retirement in Europe" (SHARE). The analysis focused on Germany (n = 7506). The widely used CASP-12 was used to quantify the quality of life. Postponed dental visits for financial reasons in the preceding 12 months (no, yes) were used as the main explanatory variable. Socioeconomic and health-related covariates were included in regression analysis., Results: Gender stratified regression analysis showed that quality of life decreased with the presence of postponed dental visits due to financial reasons in men. Furthermore, quality of life decreased with the worsening of self-rated health in both men and women. The outcome measure was not associated with age, marital status, income, and chronic diseases in both sexes., Discussion: Study findings suggest that postponing dental visits due to financial constraints contributes to a decreased quality of life among older men., Conclusion: Efforts to avoid these circumstances might help to maintain the quality of life in older men.

Background: A variety of management options (e.g. immunotherapies, lifestyle interventions, and rehabilitation) are available for people with relapsing-remitting multiple sclerosis (RRMS). Besides coping with the diagnosis, people with MS (pwMS) have to make complex decisions such as deciding about immunotherapies. In addition to factual information, reports of patient experiences (PEx) may support patients in decision-making. The added value of PEx in decision-making is not clear, and controlled studies are rare. Therefore, systematic methods are necessary to develop and analyse PEx. As there are no evaluated PEx for MS in Germany, we are currently creating a website presenting PEx structured according to topics and illustrated by video, audio, and text files. We aim to determine the feasibility of an intervention using PEx and evaluate whether PEx may help pwMS in their immunotherapy decision-making processes as a supplement to evidence-based information., Methods: This project will follow the Medical Research Council framework for development and evaluation of complex interventions. After the development of a website with PEx, a randomised controlled pilot trial (pilot RCT) will be conducted in 2-3 MS centres, clinics, or rehabilitation centres including 55 pwMS and accompanied by a process evaluation. Patients with a RRMS diagnosis considering immunotherapy are eligible. The primary outcome is decision self-efficacy. Secondary outcomes include preparation for decision-making, decisional conflict, risk knowledge, confidence in active participation, affective forecasting, social support, and self-reported impact of eHealth on its users. Participants will be randomly assigned either to (i) an intervention group with 4 weeks access to an evidence-based patient information resource and the PExMS-website as an adjunct or to (ii) the control group with access to evidence-based information alone. A 6-member advisory panel involving representatives of pwMS, researchers, and neurologists, who accompany the whole project, will mentor this pilot RCT., Discussion: The intervention was developed with systematic methods, created with active patient involvement and in critical appraisal by an expert advisory panel. The study is innovative as it contributes to the controversial evidence on the use of PEx in the context of evidence-based patient information., Trial Registration: ClinicalTrials.gov, NCT04236544.

Background: The majority of acute care hospitals are not prepared for people with dementia with acute diseases in need of treatment. This results in an increased likelihood of the personnel being overtaxed. Dementia is the most frequent reason that hospital personnel administer sedating medication and use restraining measures., Objective: The aim of this study was to investigate factors that influence the (inappropriate) use of sedating medication and physical restraints for patients with dementia in acute care hospitals., Methods: A non-randomized case control study, including two internal medicine wards was conducted in Hamburg, Germany. In the intervention group a special care concept was implemented focussing on patients with dementia, while the control group received regular care without a special dementia care concept. Logistic regression models were conducted to investigate associations between factors, such as age, severity of dementia, conspicuous behavior, Barthel index and type of treatment and the use of sedating medication and physical restraint measures., Results: Challenging behavior (odds ratio, OR = 1.32) and treatment in the control group (OR=1.94) were significantly associated with the use of sedating medication. A low Barthel index, longer periods of hospitalization and treatment in the control group were significantly associated with a higher probability of the implementation of physical restraining measures., Discussion: The use of sedating medication as well as physical restraining measures varied greatly between the intervention and control groups. This is in line with other studies that came to similar results and suggests that multiple components of special care concepts can explain these differences. These include architectonic design and spatial aspects as well as dementia-specific training of employees and an appropriate personnel complement. Such interventions can also reduce agitation and behavioral problems of patients. The avoidance of sedation and restraining measures is also positively associated with an increase in the quality of life of patients with dementia.

Objectives: To identify factors that predict the quality of life (QoL) of patients with dementia in acute hospitals and to analyse if a special care concept can increase patients' QoL., Design: A non-randomised, case-control study including two internal medicine wards from hospitals in Hamburg, Germany., Setting and Participants: In all, 526 patients with dementia from two hospitals were included in the study (intervention: n=333; control: n=193). The inclusion criterion was an at least mild cognitive impairment or dementia. The intervention group was a hospital with a special care ward for internal medicine focusing on patients with dementia. The control group was from a hospital with a regular care ward without special dementia care concept., Outcome Measures: Our main outcome was the QoL (range 0-100) from patients with dementia in two different hospitals. A Bayesian multilevel analysis was conducted to identify predictors such as age, dementia, agitation, physical and chemical restraints, or functional limitations that affect QoL., Results: QoL differs significantly between the control (40.7) and the intervention (51.2) group (p<0.001). Regression analysis suggests that physical restraint (estimated effect: -4.9), psychotropic drug use (-4.4) and agitation (-2.9) are negatively associated with QoL. After controlling for confounders, the positive effect of the special care concept remained (5.7)., Conclusions: A special care ward will improve the quality of care and has a positive impact on the QoL of patients with dementia. Health policies should consider the benefits of special care concepts and develop incentives for hospitals to improve the QoL and quality of care for these patients., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Over the last decades, health-related collective mutual aid, such as self-help groups, support groups and patient organizations, has become an important player in Germany's healthcare system. As autonomous collectives of patients and their relatives in manifold indication areas, they act and organize themselves on a voluntary basis. Increasingly, they have a greater say and are turning into collaborators in the development of the healthcare system. Self-help representatives are involved in committees as patient representatives on all political levels, national as well as federal state and local. In these roles they are also spokespersons for the interests of patients and their relatives.Self-help groups (SHGs) and self-help organizations (SHOs) are forming specific patient collectives that are seeking cooperation with the healthcare system. This article is about different forms and possibilities of inpatient and ambulatory healthcare institutions to achieve collective patient centeredness and patient involvement over and above individual patient centeredness. Furthermore, activities of SHGs and SHOs to promote their integration in healthcare structures are discussed.

Background: Self-help groups (SHGs) are an inherent part of patient involvement and play an important role in the healthcare system. Until now, however, there has been a lack of systematic investigations and quantitative data about the individual impact of self-help for patients and relatives., Objectives: This study presents the results of a comparison between members of SHGs and non-members. Thereby, the effects of self-help shall be described in terms of empowerment and self-management. The study is part of the project "Health-related Collective Self-Help in Germany" (Gesundheitsbezogene Selbsthilfe in Deutschland-SHILD) funded by the Federal Ministry of Health., Materials and Methods: The study was conducted with patients from five therapeutic areas (diabetes mellitus type 2, prostate cancer, multiple sclerosis, tinnitus, relatives of dementia patients). Participants administered a multidimensional questionnaire (paper-and-pencil or online). Of the 2870 participants in this analysis, 49% were active members of SHGs., Results: Statistical analysis showed some significant, but small differences between the two groups in five out of seven scales of the Health Education Impact Questionnaire (heiQ) in favour of the SHG members. Furthermore, SHG members performed better in specific knowledge tests. Members see the importance of their group especially in social inclusion, psychosocial relief, coping with the disease and new insights in dealing with the disease., Conclusions: With respect to the study design we cannot rule out that differences might be based on personal characteristics influencing the decision to participate in a SHG or not. But as the results are controlled for confounders, the hypothesis that SHG participation has a positive impact on the outcomes rather than vice versa seems supported.

Health literacy has recently been put on the health policy agenda in Germany, triggered by several recent studies that show that more than half of the German population has difficulties in finding, understanding, appraising and applying health information. Respective statistics reflect these individual difficulties and point at user preferences and competencies being inadequately considered and responded to by the healthcare system. Among other measures to improve this situation, a national action plan on health literacy was launched in 2018, which explicitly addresses self-help groups and self-help organisations repeatedly as an important player in promoting health literacy on individual and organisational levels.This article discusses the relevance of the underlying and guiding concept of empowerment in mutual self-help and concludes that fostering health literacy was and still is a cornerstone in health-related self-help from the very beginning - just without using this term. Based on results from surveys, we show how those participating members of self-help groups increase their health literacy, and how educative, supportive and advisory tasks for self-help groups and organisations emerge from these developments. Thereupon, the specific role of mutual self-help becomes evident for, specifically, the individual daily life dimensions of health literacy.

Objective: About 800 of the 13,000 members of the German Tinnitus Association (DTL) are active in self-help groups (SHGs). This study analyzes whether SHG-participation is associated with tinnitus-related Health Literacy (HLit) and Quality of Life (QoL)., Methods: In a cross-sectional study 1108 tinnitus patients in- and outside of SHGs administered a questionnaire containing tinnitus-related burden, QoL, tinnitus knowledge, self-management, assessment of SHGs, and socio-demographics. Participants were divided into four subgroups: (1) active SHG-members (19.6%), (2) former SHG-members (10.6%), (3) DTL-members, but not in SHG (57.9%), (4) neither DTL- nor SHG-members (11.9%)., Results: Participant were 59.7% male and 61.3 years on average. SHG-attendees are on average 5 years older than non-attendees, and have a lower education, while there are no differences in gender-distribution. Regression analyses show significant associations between SHG-participation and tinnitus knowledge, coping and self-esteem. QoL, however, is not associated with SHG-participation. SHG-members report considerable further benefits from SHG-membership., Conclusions: Despite the limitations through the cross-sectional design, it seems more likely that tinnitus-related HLit and other benefits are a result of SHG-participation than vice versa., Practice Implications: Health care providers should inform their patients about SHGs and encourage them to consider a SHG as a possible option for their self-management., (Copyright © 2018 Elsevier B.V. All rights reserved.)

Objectives: To compare oral health-related quality of life (OHRQoL) in children and adolescents with and without migration background, and to assess whether potential differences in OHRQoL can be sufficiently explained by oral health characteristics., Materials Und Methods: A consecutive sample of 112 children and adolescents was recruited in a German university-based orthodontic clinic, and a convenience sample of 313 children and adolescents of German public schools was enrolled in the study (total N = 425, age range 7-17 years). However, 29 participants were excluded due to insufficient information regarding migration background. Accordingly, the non-migrant group consisted of 262 participants (61.6%). For children with migration background, two groups were classified: (i) one parent born in a foreign country (N = 41, 9.6%, single-sided migration background), and (ii) both parents and/or child born in a foreign country ( N= 93, 21.9%, double-sided migration background). OHRQoL was assessed using the German 19-item version of the Child Oral Health Impact Profile (COHIP-G19). Additionally, physical oral health of 269 children with classified migration background was determined in a dental examination., Results: Overall, OHRQoL was significantly lower in the group with double-sided migration background indicated by lower COHIP-G19 summary scores (mean: 58.6 points) than in the group with single-sided migration background (mean: 63.3 points) or the non-migrant group (mean: 63.2 points). Likewise, the summary scores of the subscale "oral health well-being" and the subscale "social/emotional, school, and self-image" were also lower in the double-sided migrant group than in the other two groups. Linear regression analysis showed an association between double-sided migration background and impaired OHRQoL, even after statistically controlling for demographic, socioeconomic, and oral health characteristics., Conclusion: Children and adolescents with double-sided migration background have poorer OHRQoL than comparably aged migrants with single-sided migration background or non-migrations. Between-group differences in OHRQoL could not be sufficiently explained by effects of socioeconomic status or physical oral health characteristics. Thus, other methodological, cultural, or immigration-related factors might also play an important role for the observed effects.

Objectives: To compare oral health, access barriers to dental care, oral health behavior and oral hygiene behavior of elderly German residents with and without immigration background., Design: In this cross-sectional explorative study, a convenience sample (N = 112, age ≥ 60 years, 54% immigrants) was recruited in four dental practices in Hamburg, Germany. Oral health was assessed with Decayed/Missing/Filled Teeth (DMFT), Papillary Bleeding Index (PBI), and Approximal Plaque Index (API). Dental health was operationalized as number of decayed teeth, and poor oral hygiene based on a PBI ≥ 40%. Access barriers and oral health behavior were assessed with a standardized questionnaire., Results: While caries experience was similar in migrants and non-migrants (DMFT mean: 24.8 vs. 23.4, n.s.), significantly more teeth were decayed (5.3 vs. 2.1, p < 0.001), and API (55.3% vs. 33.0%, p = 0.002) and PBI (46.3% vs. 30.5%, p = 0.016) were significantly higher in migrants. After adjusting for age, sex, income, education, and number of teeth, migrants still had on average 3 decayed teeth more than non-migrants. However, impact of migration background on poor oral health changed from OR = 3.61 (p = 0.007) to OR = 1.05 (n.s.) after adjusting for confounders, mainly due to lower income in migrants. Fewer migrants had visited a dentist within the past 12 months, and migrants were less likely to have a regular dentist that they visit and more often indicated language or cost barriers than non-migrants., Conclusion: Elderly German migrants have higher treatment needs than non-migrants. Likely causes are poorer oral hygiene and lower utilization of dental care services. Specific prevention programs targeting migrants are warranted to improve oral health in this disadvantaged group.

Background: To cope with prostate cancer (PC) and its consequences and to be certain about therapeutic alternatives, some patients seek mutual help in prostate cancer support groups (PCSGs), where they share information and find social support. Our study was intended to assess whether group participation is associated with health literacy (HL)., Methods: We compared PCSG members (n = 441) with PC patients without support group experiences (n = 135) in a cross-sectional design. For this purpose, HL was operationalized through PC-specific knowledge, noncancer-specific knowledge about health care, guideline awareness, and skills needed to apply health information to meet own needs. Binary logistic regression models were calculated. Socio-demographic data and disease-related characteristics were used as control variables., Results: Knowledge about PC (OR, 2.2; CI, 1.3-3.7), the fact of having heard of guidelines (OR, 3.7; CI, 2.1-6.8) and having read one (OR, 5.1; CI, 2.8-9.4), and competencies regarding health service navigation (OR, 1.8; CI, 1.0-3.1) are associated with PCSG membership. No statistically significant associations could be found between PCSG membership and further skills questioned, as well as between membership and knowledge about noncancer-specific health care., Conclusion: PCSG membership is associated with HL in some areas only. In particular, the groups seem to provide an important platform for information exchange in the field of PC. The potentially conflicting results on PC knowledge and the application skills may arise from the different forms of measurement-knowledge was tested; skills were self-assessed., (© 2018 John Wiley & Sons, Ltd.)

Objectives: Demographic change has led to an increase of older people in need of long-term care in nearly all European countries. Informal carers primarily provide the care and support needed by dependent people. The supply and willingness of individuals to act as carers are critical to sustain informal care resources as part of the home health care provision. This paper describes a longitudinal study of informal care in six European countries and reports analyses that determine those factors predicting the outcomes of family care over a one-year period., Methods: Analyses are based on data from the EUROFAMCARE project, a longitudinal survey study of family carers of older people with baseline data collection in 2004 and follow-up data collection a year later in six European countries (Germany, Greece, Italy, Poland, Sweden, and the United Kingdom), N = 3,348. Descriptive statistics of the sample characteristics are reported. Binary logistic random-intercept regressions were computed, predicting the outcome of change of the care dyad's status at follow-up., Results: Where care is provided by a more distant family member or by a friend or neighbour, the care-recipient is significantly more likely to be cared for by someone else (OR 1.62) or to be in residential care (OR 3.37) after one year. The same holds true if the care-recipient has memory problems with a dementia diagnosis (OR 1.79/OR 1.84). Higher dependency (OR 1.22) and behavioural problems (OR 1.76) in the care-recipient also lead to a change of care dyad status. Country of residence explained a relatively small amount of variance (8%) in whether a care-recipient was cared for by someone else after one year, but explained a substantial amount of variance (52%) in whether a care-recipient was in residential care. Particularly in Sweden, care-recipients are much more likely to be cared for by another family or professional carer or to be in residential care, whereas in Greece the status of the care dyad is much less likely to change., Discussion: The majority of family carers continued to provide care to their respective older relatives over a one-year period, despite often high levels of functional, cognitive and behavioural problems in the care-recipient. Those family carers could benefit most from appropriate support. The carer/care-recipient relationship plays an important role in whether or not a family care dyad remains intact over a one-year period. The support of health and social care services should be particularly targeted toward those care dyads where there is no partner or spouse acting as carer, or no extended family network that might absorb the caring role when required. Distant relatives, friends or acquaintances who are acting as carers might need substantial intervention if their caregiving role is to be maintained.

Background: The importance of patient participation and involvement is now widely acknowledged; in the past, few systematic health-care institution policies existed to establish sustainable co-operation. In 2004, in Germany, the initiative 'Self-Help Friendliness (SHF) and Patient-Centeredness in Health Care' was launched to establish and implement quality criteria related to collaboration with patient groups., Objectives: The objective of this study was to describe (i) how patients were involved in the development of SHF by summarizing a number of studies and (ii) a new survey on the importance and feasibility of SHF., Setting and Participants: In a series of participative studies, SHF was shaped, tested and implemented in 40 health-care institutions in Germany. Representatives from 157 self-help groups (SHGs), 50 self-help organizations and 17 self-help clearing houses were actively involved. The second objective was reached through a survey of 74 of the 115 member associations of the biggest self-help umbrella organization at federal level (response rate: 64 %)., Results: Patient involvement included the following: identification of the needs and wishes of SHGs regarding co-operation, their involvement in the definition of quality criteria of co-operation, having a crucial role during the implementation of SHF and accrediting health-care institutions as self-help friendly. The ten criteria in total were positively valued and perceived as moderately practicable., Conclusions: Through the intensive involvement of self-help representatives, it was feasible to develop SHF as a systematic approach to closer collaboration of professionals and SHGs. Some challenges have to be taken into account involving patients and the limitations of our empirical study., (© 2016 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: Ethnic minorities and people with a low socio-economic status (SES) are often mentioned groups potentially affected by double stigma when faced with the burden of mental illness. Against this background we examine differences in public attitudes towards a) migrant vs. non-migrant persons with depression and b) low vs. high SES persons with depression., Method: Analyses are based on data of a representative cross-sectional telephone survey among the adult population in Germany (N=2013). To compare the four groups, different depression vignettes were presented to the respondents. Three components of stigma were assessed in the survey: (1) characteristics ascribed to persons with a depression, (2) emotional reactions to people afflicted by depression, and (3) desire for social distance., Results: Respondents less often felt annoyed when the person in the depression vignette was a migrant coming from Turkey. However, differences are not statistically significant in the vast majority of the analyzed items. In terms of the comparison between high and low SES persons, analyses reveal small and inconsistent differences in public depression stigma., Limitations: The study focusses on two deprived groups (ethnic minorities and people with a low SES) and is restricted to Germany., Conclusions: Individuals with a low SES (compared to those with a high SES) and migrants (compared to non-migrants) with depression do not seem to be confronted with double public stigma in terms of stereotypes, emotional reactions, and desire for social distance., (Copyright © 2016 Elsevier B.V. All rights reserved.)

In Germany, the term 'self-help friendliness' (SHF) describes a strategy to institutionalize co-operation of healthcare institutions with mutual aid or self-help groups of chronically ill patients. After a short explanation of the SHF concept and its development, we will present findings from a longitudinal study on the implementation of SHF in three German hospitals. Specifically, we wanted to know (i) to what degree SHF had been put into practice after the initial development phase in the pilot hospitals, (ii) whether it was possible to maintain the level of implementation of SHF in the course of at least 1 year and (iii) which opinions exist about the inclusion of SHF criteria in quality management systems. With only minor restrictions, the findings provide support for the usefulness, practicability, sustainability and transferability of SHF. Limitations of our empirical study are the small number of hospitals, the above average motivation of their staff, the small response rate in the staff-survey and the inability to get enough data from members of self-help groups. The research instrument for measuring SHF was adequate and fulfils the most important scientific quality criteria in a German context. We conclude that the implementation of SHF leads to more patient-centredness in healthcare institutions and thus improves satisfaction, self-management, coping and health literacy of patients. SHF is considered as an adequate approach for reorienting healthcare institutions in the sense of the Ottawa Charta, and particularly suitable for health promoting hospitals., (© The Author 2014. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.)

Purpose: Parents of disabled and/or chronically ill children are more vulnerable regarding their health compared to parents of healthy children. This study examines how far the burden of care is associated with health-related quality of life (QoL) in parents, across different illnesses and disabilities. Moreover, it is unclear whether and to which extent familial resources can explain the association between parents' care burden and health., Method: Data stem from a survey with the German Children's Network, a self-help umbrella organization of parents and families of chronically ill and disabled children. Data collection was conducted nationwide with a standardized online questionnaire, which included children's diagnoses and severity, burden of care, family and socioeconomic status, health-related QoL (SF-12) and family impact (Impact on Family Scale, IFS). 1567 parents participated., Results: A higher burden of care is associated with higher risks for poor health-related QoL. Especially, social impact and financial burden, which are both associated with care, can help to explain these associations., Conclusions: Future interventions should focus not only on the affected child but also on the whole family system and its social integration, as this seems likely to relief parents from burden of care. Therefore, a sustainable cooperation of health care institutions and professionals with self-help groups and parental initiatives is recommended. Implications for Rehabilitation Parents of disabled and chronically ill children are a vulnerable group regarding their health-related quality of life. A higher burden of care is associated with less social contacts, higher financial burden and higher help-needs in the household, which significantly contribute to higher health risks. Rehabilitation should take these constraints into account and put a stronger focus on the family of disabled and chronically ill children to support their inclusion. A sustainable and formally anchored collaboration with self-help and patient groups is recommended.

Objectives: The following research questions are addressed: (1) What does the German public know about dementia? (2) Are social factors, care experience and contact with dementia patients associated with knowledge about dementia? (3) Is knowledge associated with attitudes/beliefs about dementia?, Methods: Analyses are based on a German mail survey conducted in 2012. Sample consists of persons aged 18-79 years. 1795 persons filled out the questionnaire (response rate 78 %). Respondents were asked about their knowledge of and attitudes about dementia., Results: Knowledge about cause, prevention, diagnosis, treatment and life impact of dementia is characterized by a relatively high uncertainty. People with care experiences and people from higher status groups know more about dementia. People with more knowledge are less likely to believe that dementia patients have a high quality of life, but tend to be less skeptical about early detection of dementia., Conclusions: To increase knowledge, reduce uncertainty and modify attitudes towards dementia and those who are afflicted, educational programs and contact-based approaches should be considered.

Background: Media coverage of the Germanwings plane crash intensely focused on the co-pilot's mental illness and was criticized for potentially increasing depression stigma. We explored whether stigma beliefs towards persons with depression changed in April 2015 (about one month after the crash) compared to 2014., Method: Telephone surveys among the adult population were conducted in Munich, Germany (N=650 in 2014 and N=601 in 2015). In both surveys, four components of stigma were assessed: (1) characteristics ascribed to persons with a depression, (2) belief in a continuum of symptoms from mental health to mental illness, (3) emotional reactions to people afflicted by depression (fear, anger, and pro-social reactions), and (4) desire for social distance., Results: Some stigmatizing attitudes have increased after the crash. More specifically, we found more pronounced changes in the attributes ascribed (stereotypes) and in the perceived separation from persons afflicted (continuum beliefs) than in the emotional reactions and the desire for social distance. However, overall increase in depression stigma was smaller than expected as changes were not statistically significant in the majority of the analyzed items., Limitations: Due to the study design no causal interpretation of results is possible. Moreover, evidence presented is confined to a regional German sample., Conclusions: A single devastating event and related media coverage seem to have a limited impact on public stigmatizing attitudes., (Copyright © 2015 Elsevier B.V. All rights reserved.)

Aspects of implementation, functionality, acceptability and sustainability of the network psychenet - Hamburg network for mental health were examined.In March 2012 and September 2013, 19 expert interviews were carried out with leaders of subprojects and representatives of insurances, public authorities and patients.The complexity of the network was hindering. Positive aspects were communication, clear hierarchies and qualified staff.The implementation of a complex network requires shared goals. The establishment of a steering committee has proved as crucial., (© Georg Thieme Verlag KG Stuttgart · New York.)

Public knowledge about and attitudes towards mental illness were analyzed. Furthermore, changes in knowledge and attitudes after an information and awareness campaign were examined. The basis were two telephone surveys in 2011 (t0) and 2014 (t1) in Hamburg (intervention) and Munich (control). In 2011, the public was relatively well informed about mental disorders. Regarding the level of information of the public before the campaign and inconsistent results of previous evaluation studies the anticipated impact of the awareness campaign at t1 are moderate., (© Georg Thieme Verlag KG Stuttgart · New York.)

Public and patient involvement in social and health care has proceeded in many civil societies. Depending on the legislations on national and community levels, citizens and patients have a greater say in shaping social and health care. In Germany, the patient involvement by self-help organizations at the macro level (national level and level of federal states) has significantly developed over the last ten years. At the meso level, however, the patient involvement is neither such far nor such systematically developed. The concept of self-help friendliness (SHF) in health care is a patient centred model that allows the development and implementation of patient participation in different health care institutions: hospitals, ambulatory medical care, public health institutions, rehabilitation facilities etc. In a series of projects on SHF we have (1) analysed the needs and wishes of self-help groups for cooperation with health care professionals as well as their experience, (2) gathered facilitators and barriers concerning the cooperation between self-help groups and hospitals, (3) developed a framework concept for SHF in hospitals including eight quality criteria for measuring SHF, and (4) implemented the framework of SHF in about 40 health care institutions (www.selbsthilfefreundlichkeit.de). Further projects followed: development of an instrument for measuring SHF in hospitals, integration of SHF-criteria in quality management systems in inpatient care as well as in out-patient care, and transferring SHF to a) medical ambulatory care, b) public health departments, and c) rehabilitation facilities. Considering advantages and shortcomings of the approach, we can summarize that implementing SHF is feasible, transferable and a helpful measure for promoting patient centeredness in health care., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

There is an ongoing debate about equity and equality in health care, and whether immigrants benefit equally from services as the non-immigrant population. The study focuses on benefits from and adherence to the diabetes mellitus type 2 (DM 2) disease management program (DMP) among Turkish immigrants in Germany. So far, it has not been researched whether this group benefits from enrollment in the DMP as well as diabetics from the non-immigrant population. Data on the non-immigrant sample (N = 702) stem from a survey among members of a German health insurance, the Turkish immigrant sample (N = 102) was recruited in the area of Hamburg. Identical questions in both surveys enable comparing major components. Regarding process quality, Turkish diabetics do not differ from the non-immigrant sample; moreover, they have significantly more often received documentation and diabetes training. In terms of outcome quality however, results display a greater benefit on behalf of the non-immigrant sample (e.g., blood parameters and body mass index), and they also met more of the DMP criteria. This underlines the need of diabetics with Turkish background for further education and information in order to become the empowered patient as is intended by the DMP as well as to prevent comorbidities.

Background: Association between education and desire for social distance from people with mental illness is unclear., Aims: (1) Is there an association between education and social distance from people with a depression or schizophrenia? (2) Can this association be explained by beliefs about causes of and emotional reactions to the mental disorders? (3) Are there differences between the two mental disorders?, Methods: Analyses are based on a telephone survey in two large German cities (Hamburg and Munich, N = 2,014, response rate 51%). Vignettes with typical signs and symptoms suggestive of depression and schizophrenia were presented. Respondents were asked about beliefs about causes of the mental disorders, their emotional reactions and their desire for social distance., Results: Lower education is significantly associated with a stronger tendency for social distance in the case of depression but not in case of schizophrenia, when age and gender are controlled. In case of depression, the association decreases when beliefs about possible causes are additionally controlled. In terms of schizophrenia, associations between education and social distance become stronger when emotional reactions are introduced., Conclusions: Our results underline that campaigns aimed at reducing stigma and social distance should consider specific emotional reactions and information needs of people with low education regarding different mental disorders., (© The Author(s) 2013.)

Background: Emotional reactions toward people with disorders are an important component of stigma process. In this study, emotional reactions of the German public toward people with dementia were analyzed., Methods: Analyses are based on a national mail survey conducted in 2012. Sample consists of persons aged 18 to 79 years living in private households in Germany. In all 1,795 persons filled out the questionnaire, reflecting a response rate of 78%. Respondents were asked about their emotional reactions and beliefs about dementia., Results: A vast majority of the respondents expressed pro-social reactions, i.e. they felt pity, sympathy, and the need to help a person with dementia. Dementia patients rarely evoked anger (10% or less). Between 25% and 50% of the population showed reactions indicating fear. Respondents who had contacts with a person having dementia or had cared for a dementia patient tended to show less negative reactions (fear, anger) and more pro-social reactions. Respondents who showed pronounced fearful reactions were less likely to believe that dementia patients had a high quality of life, were less willing to care for a family member with dementia at home, and were more skeptical about early detection of dementia. Comparison with the results of another study suggests that fearful reactions toward persons with dementia are much more pronounced than in the case of depression, and less pronounced than in the case of schizophrenia., Conclusions: Fearful reactions toward people with dementia are quite common in the German general public. To reduce fear, educational programs and contact-based approaches should be considered.

Objectives: The analyses address the following research questions: (1) Do Turkish diabetics in Germany and Turkey differ in terms of quality of life? (2) If yes, can these differences (in part) be explained by social factors (age, gender, education, household size), functional limitations and availability of support? (3) Are social factors, functional limitations and availability of support differently associated with quality of life among Turkish diabetics in Germany and Turkey?, Design: For this comparative cross-sectional study, 111 patients with type 2 diabetes were personally interviewed in Istanbul (Turkey) and 294 Turkish patients in Hamburg (Germany). For quality of life measurement we have used the Turkish version of the WHOQOL-Bref-26. Sociodemographics included age, sex, education and household-size. Health related functional limitations were assessed on the basis of an index of (instrumental) activities of daily living including the availability of help. Statistical analyses were conducted on group comparisons with Chi-square- and T-tests as well as linear regressions., Results: There are no significant differences between Turkish diabetics in Germany and Turkey in the physical and the psychological dimensions of the WHOQOL-Bref. However, in the WHOQOL-domains 'social QoL' and 'environmental QoL' Turkish diabetics living in Hamburg have a significantly better quality of life than their counterparts in Istanbul. These differences cannot be explained by individual sociodemographic factors, functional limitations and availability of support. Furthermore, we found much stronger positive associations between education and quality of life in Istanbul than in Hamburg., Conclusion: Beyond strong similarities between the two samples in sociodemographics, physical and mental health the social and environmental quality of life was significantly assessed better by the Turkish diabetics living in Hamburg. This is most likely an effect of public investment in social security, infrastructure and health care which is also influencing the decision as to where to spend life in retirement.

Background: The national health and social care systems in Europe remain poorly integrated with regard to the care needs of older persons. The present study examined the range of health and social care services used by older people and their unmet care needs, across six European countries., Methods: Family carers of older people were recruited in six countries via a standard protocol. Those providing care for disabled older people (n = 2629) provided data on the older person's service use over a 6-month period, and their current unmet care needs. An inventory of 21 services common to all six countries was developed. Analyses considered the relationship between older people's service use and unmet care needs across countries., Results: Older people in Greece, Italy and Poland used mostly health-oriented services, used fewer services overall and also demonstrated a higher level of unmet care needs when compared with the other countries. Older people in the United Kingdom, Germany and Sweden used a more balanced profile of socio-medical services. A negative relationship was found between the number of different services used and the number of different areas of unmet care needs across countries., Conclusions: Unmet care needs in older people are particularly high in European countries where social service use is low, and where there is a lack of balance in the use of health and social care services. An expansion of social care services in these countries might be the most effective strategy for reducing unmet needs in disabled older people.

The study is focused on two research questions: What are the public's estimates of the prevalence of depression, schizophrenia, bulimia nervosa and anorexia nervosa? What is the relationship between the estimated prevalence of the mental disorders and the public's desire for social distance? Analyses are based on a telephone survey in two large German cities (Hamburg and Munich, N=2014, response rate 51%). Vignettes with typical signs and symptoms suggestive of a depression, schizophrenia, bulimia nervosa and anorexia nervosa were presented. Respondents were asked about the lifetime prevalence of the mental disorders and their desire for social distance. Across all four disorders under study the respondents markedly overestimate the rates of lifetime prevalence. Increasing prevalence estimation is associated with a significant decrease in the desire for social distance in case of schizophrenia. As for depression, anorexia nervosa and bulimia nervosa there are no significant associations. Many campaigns aimed at reducing stigma emphasize the high prevalence of mental disorders. The assumption of these campaigns is that reduction of the perceived distinction leads to a decrease of the desire for social distance towards those afflicted. Our results indicate that this may not generally be an effective way to reduce stigma., (Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.)

Purpose: It has been assumed that biogenetic causal models may improve public attitudes toward people with mental illnesses. The present study examines whether biogenetic attributions are positively associated with acceptance of people suffering from these disorders., Methods: Population surveys were conducted in two large German cities. Respondents were presented with a vignette depicting a young female suffering from either anorexia nervosa (N = 680) or bulimia nervosa (N = 667), followed by a fully structured interview including questions on causal attributions, emotional reactions and desire for social distance., Results: Attribution to hereditary factors showed hardly any relationship with attitudes toward people with symptoms of eating disorders. Respondents who endorsed brain disease as a cause tended more to hold those afflicted responsible for their condition, they also expressed more negative emotions and a stronger preference for social distance., Conclusions: Our results do not support the notion that promulgating biogenetic causal models of eating disorders helps decrease the stigma surrounding these illnesses; it may even entail the risk of increasing it.

Purpose: The association between socioeconomic status (SES) and knowledge/belief about depression, schizophrenia and eating disorders will be analysed., Methods: Data stem from a telephone survey in two large German cities (Hamburg and Munich, n = 2,014, response rate 51 %). Written vignettes with typical signs and symptoms suggestive of a depression, schizophrenia and eating disorders were presented to the respondents. Respondents were then asked about knowledge/belief about causes, symptoms, prevalence and treatment using a standardised questionnaire. Education, occupational position and income were used as SES indicators., Results: Results of mixed hierarchal logistic regression analyses show that individuals with a low SES know less about symptoms and prevalences of depression, schizophrenia and eating disorders. Moreover, people with a high SES are more likely to consider medication as effective in case of depression and schizophrenia, but are less likely to believe that activities such as sports or relaxation are an effective measure to treat the three mental disorders under study. Respondents with a high SES are less likely to believe that a weak will is a possible cause of depression, schizophrenia and eating disorders. We found large similarities in the associations between SES and beliefs across the three mental disorders. Finally, associations of beliefs about mental disorders with education are stronger and more consistent than with income and occupational position., Conclusions: Results indicate an inequality in mental health literacy and underline that information campaigns on causes, symptoms, prevalence and treatment of mental disorders should consider information needs of people with a low SES.