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INTRODUCTION: More than one third of cancer survivors are of working age. Return to work (RTW) with and after cancer treatment is therefore an important issue for this group - but this is often accompanied with many challenges. The aim of this systematic review was to identify predictors of RTW after cancer from the literature specifically for Germany and to place these factors chronologically in the oncological course of treatment. METHODS: A systematic search was performed using PubMed in June 2022. Included were all papers original published in German or English between 2000 and 2022 and referring to a German sample, regardless of study design. RESULTS: From a total of 8,381 hits in the meta-database, 30 publications were finally considered in the synthesis of results. Higher age, lower education, lower socioeconomic status, higher disease stage, more progressive disease course, more severe side effects of treatment, (more severe) fatigue, higher psychological distress, worse health status, occupational status as a blue collar worker and manual labor, unemployment prior to diagnosis, more negative perceptions of the work(place) environment, and lower intention to work and lower work ability/ subjective prognosis of employability were associated with lower likelihood of RTW after cancer in the literature. Treatment type and use of rehabilitation were also found to be associated with RTW. DISCUSSION: Sociodemographic, disease-related, psychosocial, and work-related predictors of RTW after cancer in Germany were identified. The results may help to develop targeted support measures that can be applied in specific phases of treatment. The comparability of the literature on predictors for RTW is limited due to a high heterogeneity in the operationalization of RTW and methodological approaches. There is need for further standardization in this area.
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Sobreviventes de Câncer , Neoplasias , Retorno ao Trabalho , Humanos , Alemanha , Retorno ao Trabalho/estatística & dados numéricos , Sobreviventes de Câncer/estatística & dados numéricos , Neoplasias/reabilitação , Neoplasias/epidemiologia , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Fatores de Risco , Emprego/estatística & dados numéricos , PrognósticoRESUMO
In a recent article, research on clinician responses to emotions and patient ratings of communication is presented. In the discussion section, the authors refer to results from a multidisciplinary research team including the authors of this correspondence. The results of both studies differ in some respects: A closer look at the methodology and the results could help to better understand these different results.
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Comunicação , Emoções , Relações Médico-Paciente , Humanos , Satisfação do PacienteRESUMO
OBJECTIVE: Multidisciplinary tumor conference (MTC) is a key instrument in multidisciplinary cancer care. In recent years, if and how patient participation in MTC can contribute to a more patient-centered care have been scientifically discussed. This study aimed to identify determinants of treatment confidence in the context of patient participation in MTC. Therefore, the association among health literacy-sensitive communication, trust in health-care providers (HCP), and treatment confidence is examined. METHODS: This study used data from the multicenter, observational study "PINTU" on patient participation in MTC. Data were collected from November 2018 to February 2020. Validated scales for treatment confidence, health literacy-sensitive communication, and trust in providers were included in the structural equation modeling (SEM) analysis. RESULTS: A total of 95 patients participated in MTC. The sample compromised n = 80 completed datasets. The SEM fit measures indicated good fit of the proposed model. The analysis showed a positive association between health literacy-sensitive communication and treatment confidence when adding the mediating effect of trust in providers. CONCLUSION: Patient-centered communication during MTC in combination with a trustful relationship between participating patients and health-care providers is positively associated with treatment confidence. The results indicated the relevance of a trustful doctor-patient communication and relationship. Trainings for physicians targeting patient-centered communication could be a promising approach to strengthen patient participation.
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Letramento em Saúde , Neoplasias , Participação do Paciente , Assistência Centrada no Paciente , Relações Médico-Paciente , Confiança , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Neoplasias/terapia , Neoplasias/psicologia , Idoso , Adulto , Análise de Classes Latentes , ComunicaçãoRESUMO
PURPOSE: This study aimed to gain a deeper understanding of the coping processes of breast cancer survivors (BCSs) during medical and occupational rehabilitation after acute treatment. METHODS: This study is part of the mixed-methods Breast Cancer Patients' Return to Work study conducted in Germany. Data were collected through semistructured interviews with 26 female BCSs 5-6 years after their diagnosis. A qualitative content analysis was conducted to investigate the coping strategies and contextual factors of coping of BCSs. RESULTS: The participants used different strategies for coping with their breast cancer, namely, approach- versus avoidance-oriented coping and emotion- versus problem-focused coping. During the medical rehabilitation process, coping behavior was used mainly to address disease management and its consequences. During the occupational rehabilitation process, most coping strategies were used to overcome discrepancies between the patient's current work capacity and the job requirements. The contextual factors of coping were in the health, healthcare, work-related, and personal domains. CONCLUSION: The study findings provide in-depth insights into the coping processes for BCSs during the rehabilitation phase and highlight the importance of survivorship care after acute cancer treatment. IMPLICATIONS FOR CANCER SURVIVORS: The results indicate that BCSs employ approach- and avoidance-oriented strategies to cope with their cancer during rehabilitation. As both attempts are helpful in the short term to cope with physical and emotional consequences of the cancer, healthcare and psychosocial personnel should respect the coping strategies of BCSs while also being aware of the potential long-term negative impact of avoidance-oriented coping on the rehabilitation process.
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Neoplasias da Mama , Sobreviventes de Câncer , Humanos , Feminino , Adaptação Psicológica , Neoplasias da Mama/psicologia , Capacidades de Enfrentamento , Sobreviventes/psicologiaRESUMO
BACKGROUND: Interprofessional communication is of extraordinary importance for patient safety. To improve interprofessional communication, joint training of the different healthcare professions is required in order to achieve the goal of effective teamwork and interprofessional care. The aim of this pilot study was to develop and evaluate a joint training concept for nursing trainees and medical students in Germany to improve medication error communication. METHODS: We used a mixed-methods, quasi-experimental study with a pre-post design and two study arms. This study compares medical students (3rd year) and nursing trainees (2nd year) who received an interprofessional communication skills training with simulation persons (intervention group, IG) with a control group (CG). Both cohorts completed identical pre- and post-training surveys using the German Interprofessional Attitudes Scale (G-IPAS) and a self-developed interprofessional error communication scale. Descriptive statistics, Mann-Whitney-U-test and Wilcoxon-test were performed to explore changes in interprofessional error communication. RESULTS: A total of 154 were medical students, and 67 were nursing trainees (IG: 66 medical students, 28 nursing trainees / CG: 88 medical students, 39 nursing trainees). After training, there were significant improvements observed in the "interprofessional error communication" scale (p < .001) and the "teamwork, roles, and responsibilities" subscale (p = .012). Median scores of the subscale "patient-centeredness" were similar in both groups and remained unchanged after training (median = 4.0 in IG and CG). CONCLUSIONS: Future studies are needed to find out whether the training sustainably improves interprofessional teamwork regarding error communication in acute care.
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Estudantes de Medicina , Estudantes de Enfermagem , Humanos , Projetos Piloto , Relações Interprofissionais , Atitude do Pessoal de Saúde , Comunicação , Equipe de Assistência ao PacienteRESUMO
Introduction: Interprofessional healthcare teams are important actors in improving patient safety. To train these teams, an interprofessional training program (IPTP) with two interventions (eLearning and blended learning) was developed to cover key areas of patient safety using innovative adult learning methods. The aims of this study were to pilot test IPTP regarding its effectiveness and feasibility. The trial was registered with DRKS-ID: DRKS00012818. Methods: The design of our study included both a pilot investigation of the effectiveness of the two interventions (eLearning and blended learning) and testing their feasibility (effectiveness-implementation hybrid design). For testing the effectiveness, a multi-center cluster-randomized controlled study with a three-arm design [intervention group 1 (IG1): eLearning vs. intervention group 2 (IG2)]: blended learning (eLearning plus interprofessional in-person training) vs. waiting control group (WCG) and three data collection periods (pre-intervention, 12 weeks post-intervention, and 24 weeks follow-up) was conducted in 39 hospital wards. Linear mixed models were used for the data analysis. The feasibility of IPTP was examined in 10 hospital wards (IG1) and in nine hospital wards (IG2) using questionnaires (formative evaluation) and problem-focused interviews with 10% of the participants in the two intervention groups. The collected data were analyzed in a descriptive exploratory manner. Results: Pilot testing of the effectiveness of the two interventions (eLearning and blended learning) showed no consistent differences between groups or a clear pattern in the different outcomes (safety-related behaviors in the fields of teamwork, error management, patient involvement, and subjectively perceived patient safety). Feasibility checks of the interventions showed that participants used eLearning for knowledge activation and self-reflection. However, there were many barriers to participating in eLearning, for example, lack of time or access to computers at the ward. With regard to in-person training, participants stated that the training content sensitized them to patient-safety-related issues in their everyday work, and that awareness of patient safety increased. Discussion: Although the interventions were judged to be feasible, no consistent effects were observed. A possible explanation is that the duration of training and the recurrence rate may have been insufficient. Another conceivable explanation would be that participants became more sensitive to patient safety-critical situations due to their knowledge acquired through the IPTP; therefore, their assessment post-intervention was more critical than before. In addition, the participants reported high pre-measurement outcomes. Future studies should examine the evidence of the intervention within a confirmatory study after adapting it based on the results obtained.
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INTRODUCTION: While maintaining or restoring work ability after a cancer diagnosis is an essential aim of the rehabilitation process for working-age patients, problems can arise during the return to work (RTW) or when retaining work. Counselling could provide support for patients with or after cancer with employment-related questions (eg, questions related to RTW and work retention). Outpatient psychosocial cancer counselling centres in Germany offer counselling on work-related questions; however, resources for this are limited. This protocol presents a feasibility study of an intensified needs-based counselling intervention that supports those seeking employment-related advice. METHODS AND ANALYSIS: The CARES (cancer rehabilitation support by cancer counselling centres) project is a feasibility study for a newly developed counselling intervention. The intervention is being developed as part of the project and piloted in about 20 outpatient cancer counselling centres. The CARES study has a quasi-experimental pre-post design with a control cohort. First, patients who undergo regular counselling are recruited. Second, after the counsellors have been trained for the newly developed intervention, participants for the intervention group are recruited from the cancer counselling centres. Quantitative and formative evaluations will be performed in accordance with the existing guidelines. The quantitative evaluation comprises three patient surveys (at the beginning of the counselling process, 3 months into the counselling process and, for the intervention group, at the end of the counselling process) and routine data of the counselling process. The formative evaluation includes interviews with patients, counsellors and other stakeholders, as well as participatory observations of counselling sessions. ETHICS AND DISSEMINATION: Approval has been obtained from the ethics committee of the Medical Faculty of the University Bonn (061/22; 09.04.2022). A data protection concept ensures adherence to data protection regulations for the handled data. The dissemination strategies include discussing the results with the cancer counselling centres. TRIAL REGISTRATION NUMBER: German Clinical Trials Register (DRKS00028121); Pre-results.
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Aconselhamento , Neoplasias , Humanos , Estudos de Viabilidade , Alemanha , Neoplasias/psicologia , Retorno ao TrabalhoRESUMO
OBJECTIVE: More than one in 10 cancer patients care for dependent children. It is unclear whether this status makes a difference in terms of the distress and associated problems they experience, or whether it is linked to differences in the need for or utilization of psychosocial support. METHODS: Secondary analysis of a cross-sectional German study in National Comprehensive Cancer Centers using self-report standardized questionnaires administered to inpatients. Patients living with dependent children (n = 161) were matched by age and sex with a subsample of 161 cancer patients not living with dependent children. The resulting sample was tested for between-group differences in Distress Thermometer (DT) scores and the corresponding DT Problem List. Additionally, between-group differences in measures of the need for and utilization of psychosocial support were examined. RESULTS: More than 50% of all patients suffered from clinically relevant distress. Patients living with dependent children reported significantly more practical (p < 0.001, η2 p = 0.04), family (p < 0.001, η2 p = 0.03), and emotional problems (p < 0.001, η2 p = 0.01). Although reporting a greater need for psychological support, parents with cancer were not found to more frequently utilize any type of psychosocial support. CONCLUSIONS: The specific problems and needs of parents with cancer who care for dependent children are currently not sufficiently addressed in the clinical care pathways. All families should be helped to establish open and honest communication as well as understand the available support systems and what they can provide. Tailored interventions should be implemented for highly distressed families.
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Disfunção Cognitiva , Neoplasias , Humanos , Criança , Estresse Psicológico/psicologia , Estudos Transversais , Pais , Ansiedade , Neoplasias/terapia , Neoplasias/psicologiaRESUMO
Purpose: This study aimed (1) to analyze patients' perceived shared decision-making (SDM) experiences over 4 weeks between patients participating or not in multidisciplinary tumor conferences (MTCs) and (2) to analyze the association of patients' active participation in and organizational variables of MTCs with patients' perceived SDM experience directly after MTC. Patients and Methods: From the N=317 patients, this observational study included patient surveys, observations, and audio transcripts from MTCs with (N=82) and without (N=145) patient participation in six breast and gynecologic cancer centers. We performed t tests for within- and between-group comparisons and linear regression with "patients' perceived SDM experiences in MTC" as the dependent variable. Results: Patients' perceived SDM experiences increased at 4 weeks after MTC (p<0.001) with lower perceived SDM experiences for participating versus nonparticipating patients (p<0.001). Linear regression showed that the organizational variable "round table seating arrangement" was significantly associated with higher perceived SDM experiences compared with a theater or U-shape arrangement (beta=-0.38, p=0.043; beta=-0.69, p=0.010) directly after MTC. Conclusion: Results provide first insights into patients' perceived SDM experiences in MTCs. SDM in MTCs is associated with organizational variables of MTCs. A round table seating arrangement in MTCs with patient participation seems important for patients' perceived SDM experiences. The relatively low perceived SDM experiences of participating patients directly after MTC indicates room for improvement, eg concerning patient-centered communication.
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The aim of the present study was to develop recommendations for a core curriculum for master's degree programs in health services research. For this purpose, a standardized online survey of university lecturers was conducted in the first step. In the second step, the curricula of the existing study programs were analyzed. In the third step, a literature search was conducted. In the last step, the resulting recommendations were discussed in a panel of experts. The final recommendations comprise 13 topics on five guiding questions with 26 subtopics. The main topics come from the areas of basic sciences in the context of health services research, the health care system and health policy, the (empirical) health services research process, and knowledge transfer. The present recommendations will serve as a basis for discussion and as a starting point. The development of recommendations should be seen as an ongoing process, as the core competencies of health services researchers will have to be continuously adapted to new research topics, new research methods and regulations.
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Currículo , Atenção à Saúde , Humanos , Alemanha , Pesquisa sobre Serviços de SaúdeRESUMO
OBJECTIVE: Families with one parent suffering from cancer are exposed to extraordinary emotional and organizational burdens, affecting underaged children. To help coordinated access to social and logistic support options and thus reduce the stress on family members, the project Brückenschlag was founded. The aim of this paper was to evaluate the implementation of this pilot project following the healthcare utilization model by Andersen. METHODS: A cross-sectional observational study was conducted using a mixed-method approach. Semi-structured written expert surveys (n=10) and secondary analysis of routine data of the care model (n=171 families) were combined. RESULTS: Quantitative secondary analysis: The participating families had 1-7 children (median (m) 2, range (s) 6). In 66% of the cases, the mother was affected by cancer, in 20% the diseased parent was in a single parent household. The communication structure in these families was rated "limited" to "rather open". Of the total of 171 contacts (study period 9/14 to 11/17), 133 families made use of Brückenschlag; 59.2% of the contacts were made by psycho-oncologists and the social services department of the hospital. If the contact was initiated by the patients themselves or by psycho-oncologists, a guidance was established significantly more frequently (significance of chi-squared test 0.047). Qualitative analysis: There was a lack of awareness and coordination of existing support services and a lack of family resources to use existing support offers. Both the desired and the established support fell primarily in the area of organizational support. Brückenschlag improved networking and took on a navigating function for the families. CONCLUSION: The data collected indicate that in families, matching the German average in their socio-demographic characteristics, a great need for organizational support develops as soon as one parent becomes sick with cancer. The model project Brückenschlag creates an access to support services for families with one parent suffering from cancer.
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Neoplasias , Pais , Feminino , Humanos , Criança , Projetos Piloto , Estudos Transversais , Alemanha , Pais/psicologia , Mães , Neoplasias/epidemiologia , Neoplasias/terapia , Neoplasias/psicologiaRESUMO
Introduction: Estimated 50,000 minor children in Germany experience a newly diagnosed cancer in one of their parents every year. Family resilience has proven to be an important concept against life crises. However, little research exists regarding family resilience in the context of parental cancer with minor children. Based on the "Family Resilience Framework," the aim of the study is to investigate the processes of family resilience of affected families. In addition, we explore which combinations of promoting family resilience processes can be characterized. Methods: As part of the mixed-method quasi-experimental interventional study "F-SCOUT," a qualitative content analysis was used to analyze the documentation of the "Family-Scouts" (a fixed contact person who advises, accompanies, and supports the families). Documentation was performed by families' study inclusion (T0), after 3 months (T1) and 9 months (T2) concerning current family situation, organization of everyday life, emotional coping, open communication within the family, and planned tasks. Results: The N = 73 families had between one and six children. In 58 (79%) families, the mother had cancer. In the course of the analysis, a category system with 10 main categories and 36 subcategories emerged. Family resilience processes were described to different extents. Combinations of categories promoting family resilience were characterized by the use of social resources, flexibility, economic resources, and open communication. Discussion: The findings are consistent with existing assumptions about family resilience in terms of the importance of social resources, family cohesion, mutual support, flexibility, open communication, and psychological well-being. In contrast to the findings of previous research, spirituality, and collaborative problem-solving indicate less centrality here. In turn, the findings on economic resources and information-seeking provide a valuable addition to the family resilience literature in the context of parental cancer with minor children. Clinical trial registration: ClinicalTrials.gov, identifier NCT04186923.
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INTRODUCTION: Patient-provider communication is an important factor influencing the quality of care in oncology. The study examines the comparative effectiveness of a 10-hour interprofessional communication skills training (CST) programme for physicians and nurses in cancer centres. METHODS AND ANALYSIS: KommRhein Interpro is a cluster-randomised trial sponsored by the German Cancer Aid (Deutsche Krebshilfe, DKH) and conducted at the cancer centres of the university hospitals of Aachen, Bonn, Cologne and Düsseldorf. Thirty oncology teams of four cancer centres are randomly assigned to three study arms, providing healthcare professionals with either (a) only written information on patient-centred communication or (b) written information plus CST for physicians or (c) written information plus interprofessional CST for physicians and nurses. For summative evaluation, standardised surveys from three measurement points for patients (T0pat: study enrollment; T1pat: after discharge; T2pat: 3 months' follow-up) and two measurement points for physicians and nurses (T0hcp: before the intervention; T1hcp: after the intervention) are used. N=1320 valid patient cases are needed for data evaluation. The primary endpoint is fear of progression in patients with cancer after discharge. Data will be analysed according to the intention-to-treat principle using a mixed model for repeated measurement. Secondary outcome is the providers' self-efficacy in patient centeredness. Individual confounders and possible moderating effects of organisational factors will be considered. Secondary analysis will be performed by means of multilevel analysis and structural equation modelling. ETHICS AND DISSEMINATION: A vote of approval has been obtained from the ethics committees of the medical faculties of RWTH Aachen University (EK325/20), University of Bonn (391/20), University of Cologne (20-1332) and Heinrich Heine University Düsseldorf (2019-796). Data protection regulations are adhered to for all processed data. The conduct of the study will be monitored. Dissemination strategies include a transfer workshop with cancer teams and distribution of the final study report to participants. TRIAL REGISTRATION NUMBER: DRKS00022563; DRKS (German Clinical Trials Register).
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Neoplasias , Médicos , Humanos , Oncologia/educação , Neoplasias/terapia , Comunicação , Docentes de Medicina , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
BACKGROUND: In some breast and gynaecologic cancer centres in Germany, patients participate in their own case discussion in multidisciplinary tumour conferences (MTCs), where treatment recommendations are discussed and finalized. However, the extent to which patients in MTCs are involved in decision-making on treatment recommendations remains largely unexplored. Hence, this study investigates how recommendations are communicated to patients and the extent to which the interactions with patients in MTCs are in line with shared decision-making (SDM). METHODS: In this observational study, we audio-recorded MTCs with patient participation in three breast and gynaecologic cancer centres in Germany. We qualitatively analysed the data with regard to content and linguistic aspects. RESULTS: We analysed 82 case discussions. Recommendations made during MTCs were regarding (i) treatment options, (ii) treatment initiation, (iii) next (treatment) steps and (iv) whether a treatment method should be initiated at all. The decision about recommendations depended in part on patients' preferences or further course/further outcomes. Although the purpose of MTCs is to provide recommendations, some recommendations were framed as the final decision. The majority of the decision-making conversation could be characterized as option talk (78%), during which patients were mostly proposed only one (treatment) option. CONCLUSIONS: This study establishes limited SDM in MTCs with patient participation. By indicating choices and thereby creating awareness of choices among patients, MTCs with patient participation could be used to foster SDM implementation. PATIENT OR PUBLIC CONTRIBUTION: Two representatives of a large self-help organization for patients with breast cancer assisted the research project, particularly, in discussing the results.
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Neoplasias da Mama , Participação do Paciente , Humanos , Feminino , Tomada de Decisão Compartilhada , Preferência do Paciente , Alemanha , Neoplasias da Mama/terapia , Tomada de DecisõesRESUMO
OBJECTIVE: Patients' participation is part of patient-centeredness, but it is so far unclear whether providers in multidisciplinary tumor conferences (MTCs) with patient participation communicate in a patient-centered way. Our aim is to explore (a) to what extent providers ask questions to breast and gynecological cancer patients during case discussion in MTCs, (b) how providers respond to patients' expressions of emotions during case discussions, and (c) which patient- and context-related characteristics and responses are associated with patients' trust in the treatment team after the case discussion. METHODS: This observational study included survey data and audio recordings of MTCs with patient participation at three breast and gynecological cancer centers. Providers' questions to patients and responses to patients' emotional expressions were coded using the Verona Coding Definitions of Emotional Sequences. The response can be explicitly or non-explicitly related to the emotion and space-reducing or space-providing. Multiple linear regression analysis was used to determine associations between providers' responses, patient- and context-related characteristics, and patients' trust in the treatment team after the case discussion. RESULTS: We analyzed 82 case discussions (77 breast, 5 breast and gynecological cancer patients). Providers asked a total of 646 questions, of which 86% were polar (yes/no). Providers gave 303 responses to a total of 230 emotional expressions by patients. Non-explicit responses were associated with more trust when they were space-providing, but with less trust when space-reducing. CONCLUSIONS: The frequency of providers' closed questions and space-reducing responses to emotions shows that patient-centered communication rarely takes place in MTCs with patient participation.
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Neoplasias , Participação do Paciente , Comunicação , Emoções , Humanos , Assistência Centrada no Paciente , Relações Médico-PacienteRESUMO
INTRODUCTION: Hand hygiene measures are essential to protect nursing home residents against nosocomial infections. Evidence on the prevention of nosocomial infections for nursing home residents by general practitioners during their medical visits in nursing homes or how they enable nursing home residents to perform hand hygiene measures is lacking. This study aimed to explore hand hygiene behaviors of general practitioners in nursing homes, their attitudes toward infection prevention measures, and the enablement of nursing home residents in performing hand hygiene measures. MATERIALS AND METHODS: Semi-structured interviews were conducted with general practitioners and nursing home residents in Germany. Interviews were audio-recorded and transcribed. Data were analyzed using thematic content analysis. RESULTS: Overall, 12 general practitioners and 12 nursing home residents participated in the study. The general practitioners expressed the fact that the possibilities for practicing hand hygiene differ in individual nursing homes. For nursing home residents, the availability of hand rub solutions was limited. Instructions for residents on hand disinfection from general practitioners was not described. Due to the lack of enablement, the residents' knowledge on how to correctly perform hand hygiene was low, although some of the nursing home residents have experience with multidrug-resistant organisms. The nursing home residents varied in their needs for active participation and enablement during the general practitioners visit. CONCLUSION: Nursing home residents require continuous enablement by their general practitioners to maintain adequate hand hygiene. Therefore, general practitioners should consider the different needs of nursing home residents to ensure adequate individual hand hygiene and safety for the residents. Existing guidelines for infection prevention and control do not adequately cover the nursing home care setting for the enablement of residents to enquire about hand hygiene.
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Infecção Hospitalar , Clínicos Gerais , Higiene das Mãos , Infecção Hospitalar/prevenção & controle , Desinfecção das Mãos , Humanos , Casas de SaúdeRESUMO
The "DNVF Memorandum Health Literacy (Part 2): Operationalization and Measurement of Health Literacy from the Perspective of Health Services Research" of the German Network for Health Services Research represents the continuation of the memorandum "DNVF Memorandum Health Literacy (Part 1): Background, Subject and Issues in Health Services Research". In addition to the general requirements for the measurement of health literacy, this memorandum also deals with the specific requirements, such as the differentiation of health literacy from related constructs, the differences between performance-based and self-assessment methods, the differences between generic and specific instruments, the use of screening instruments, and the measurement of health literacy in special populations. Furthermore, special considerations about the measurement of digital health literacy, potentials of qualitative and participatory research approaches as well as research ethics in the measurement of health literacy will be elaborated on. A special emphasis is placed on practical relevance for health services researchers. Finally, the authors will give an outlook on challenges and research desiderata in connection with the measurement of health literacy in the context of health services research.
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Letramento em Saúde , Alemanha , Pesquisa sobre Serviços de Saúde , Projetos de PesquisaRESUMO
BACKGROUND: There is a significant number of long-term breast cancer survivors in Germany. However, research on the psychological challenges of cancer survivors is limited. This analysis describes prevalence, development and determinants of depression and anxiety 5 to 6 years after diagnosis and identifies predictors for an increase of anxiety and depression over time. METHODS: Data from 164 women was collected by survey and tumour documentation during post-operative hospital stay, 40 weeks and 5 to 6 years after diagnosis. Anxiety and depression were measured by the Hospital Anxiety and Depression Scale. Sankey-diagrams were created for visual presentation of prevalence over time. Logistic and linear regression models were calculated to identify determinants of anxiety and depression. RESULTS: Respondents had higher levels of depression and anxiety 5 to 6 years than 40 weeks after the diagnosis. Lower vocational status and having children were associated with depression, surgery type was correlated with anxiety, and age, as well as comorbidities, were predictors for both anxiety and depression 5 to 6 years after diagnosis. An increase of depression over time was more likely when having children and comorbidities. An increase in anxiety was less likely after cancer recurrence. CONCLUSIONS: Findings highlight that anxiety and depression are relevant burdens for breast cancer survivors in Germany. Several sociodemographic and clinical predictors are identified. There is need for psychosocial support after acute treatment and in the long-term. Research on psychological burdens of long-term breast cancer survivors in the identified vulnerable groups is needed.
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Neoplasias da Mama , Sobreviventes de Câncer , Ansiedade/epidemiologia , Ansiedade/etiologia , Neoplasias da Mama/complicações , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/cirurgia , Sobreviventes de Câncer/psicologia , Criança , Depressão/epidemiologia , Depressão/etiologia , Depressão/psicologia , Feminino , Humanos , Recidiva Local de Neoplasia/complicações , Recidiva Local de Neoplasia/psicologia , PrevalênciaRESUMO
OBJECTIVE: To investigate (a) how many questions and negative emotions (cues/concerns) breast and/or gynecologic cancer patients and companions express during their case discussion in multidisciplinary tumor conferences (MTCs), (b) with which topics the emotions are linked, and (c) which patient- and context-related characteristics determine patients' communicative behavior. METHODS: This observational study included audio/video recordings of MTCs with patient participation in three breast and gynecological cancer centers. Using the Verona Coding Definitions of Emotional Sequences, patients' and companions' questions and negative emotions expressed were analyzed. Multiple regression analyses were used to determine associations between communicative behavior and patient- and context-related characteristics. RESULTS: We identified 607 questions and 230 cues/concerns expressed by patients/companions in 82 case discussions in MTCs. The number of questions was significantly associated with the hospital. In case discussions with patients who had need for psychological support and who were accompanied, more questions were asked by patients/companions. CONCLUSION: The results show that active patient participation does not depend only on patient characteristics, but also on the hospital setting. PRACTICE IMPLICATIONS: If cancer centers want to enable patient participation in MTCs, they must define the role of the patient before. Subsequently, conditions must be created to enable this role expectation.
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Amigos , Neoplasias , Comunicação , Emoções , Feminino , Amigos/psicologia , Humanos , Participação do Paciente , Relações Médico-Paciente , Encaminhamento e ConsultaRESUMO
PURPOSE: Considering that breast cancer survivors (BCSs) have been dealing with unwanted job changes after diagnosis, this study aimed to investigate involuntary job changes (unwanted modifications in employment since diagnosis) and explore the association between job changes, involuntariness, and occupational development satisfaction in BCSs 5-6 years after diagnosis. METHODS: Data were drawn from the mixed-methods breast cancer patients' return to work (B-CARE) study. We surveyed 184 female BCSs who were working at the time of study enrollment during hospitalization (T1), 10 weeks after discharge (T2), 40 weeks after discharge (T3), and 5-6 years after diagnosis (T4) and used descriptive measures and stepwise linear regression models for data analysis. RESULTS: The mean age of BCSs was 57 years. A total of 105 participants reported 410 job changes, of which 16.1% were reportedly (rather) involuntary. The most commonly reported involuntary changes were increased workload (15.2%) and increased scope of work (15.2%). In the final model, significant predictors of satisfaction with occupational development 5-6 years after diagnosis were age, state of health ΔT2-T3, state of health ΔT3-T4, and involuntariness of job changes. CONCLUSIONS: Although the number of job changes alone is not substantially associated with BCSs' satisfaction with occupational development, experiencing involuntary job changes is. Sociodemographic, disease-related, and work(place)-related factors may influence occupational satisfaction among BCSs. IMPLICATIONS FOR CANCER SURVIVORS: The findings indicate the importance of strengthening one's ability to work as desired to prevent involuntary job changes and enable desired work participation in long-term support. The significance of workplace characteristics highlights the need for employers to encourage satisfying work participation. TRIAL REGISTRATION NUMBER: German Clinical Trials Register (DRKS00016982), 12 April 2019.