Awareness and use of psychosocial care among cancer patients and their relatives-a comparison of people with and without a migration background in Germany.

PURPOSE: We examined how migration background is associated with awareness and usage of psycho-oncology services. METHODS: Oncologists in community-based practices and outpatient clinics asked their patients and their relatives to complete a questionnaire. Migrants were purposely over-sampled. The questionnaire was provided in Arabic, English, Farsi, French, German, Hindi, Kurdish, Pashto, Russian, Somali, Turkish, Urdu, and Vietnamese. RESULTS: From 9 collaborators, 177 participants were enrolled (130 with and 47 without migration background). The existence of outpatient cancer counselling centres was known to 38% of the participants without and 32% with migration background, self-help groups to 32 vs. 12%, and psychotherapy to 43 vs. 25%. Respondents from the Near and Middle East were less likely to know about psychotherapy (odds ratio (OR) 0.1, p = 0.01); those from the Commonwealth of the Independent States or former Yugoslavia were less often informed about self-help groups (OR 0.1, p = 0.06). Migrants retrieved information less frequently from the internet than non-migrants (10 vs. 25%). At least one service had been used by 27% of migrants and 42% of non-migrants (OR 0.5, p = 0.06). After adjusting for gender, age, education, and patient-relative status, there was no evidence for an association between migration background and service use. CONCLUSIONS: Migrants should be better informed about psychotherapy and self-help groups, in particular the ones coming from the Near or Middle East and the Commonwealth of the Independent States or former Yugoslavia. The under-use of psychosocial services can largely be explained by confounding factors. Therefore, these factors must always be taken into account when analysing the use of psychosocial services in the aforementioned populations.

Experience of office-based haematologists and oncologists with outpatient psycho-social support services for cancer patients with and without migration background in Germany.

PURPOSE: We compared the perception of office-based haematologists and oncologists regarding the availability of outpatient psycho-social support services (PSSS) for patients with cancer and a migration background, as well as their different experiences with these services. METHODS: Data were collected via an online survey addressing the doctors' socio-demographic characteristics and their perception of-and experience with PSSS. The association between socio-demographic characteristics of the doctors and their experiences with PSSS was tested using Pearson's chi-squared test and Kruskal-Wallis test. RESULTS: A total of 55 doctors were included in this study. More than three doctors in four reported non-sufficient presence of PSSS in foreign languages in their region; one in two reported that the services for patients with migration background should be improved. Most doctors reported missing PSSS in Turkish and Arabic in their region. Doctors with less experience referred patients more often to PSSS hosted in patients' associations (75% vs 25%; p = 0.02), than doctors with more experience. Doctors working in larger cities referred patients less often to PSSS in cancer counselling centres (12% vs 88%; p = 0.01), than doctors working in small or middle-large cities. Male doctors were more satisfied with the network of PSSS' providers, than female doctors (mean score = 2.8 vs 2.2; p = 0.05). CONCLUSIONS: Our results suggest that efforts should be made for a higher regional availability of overall and specific PSSS for non-German speaking patients (especially for Turkish- and Arabic-speaking patients). The experience with PSSS was associated with the doctors' work experience and gender, as well as the location of the practice.

Capturing Diabetes-Related Distress and Burden From the Perspective of Patients With Type 1 or Type 2 Diabetes: Protocol for an Explorative Mixed Methods Study.

BACKGROUND: Diabetes is one of the most common diseases worldwide and is associated with increased morbidity, mortality, and reduced quality of life. Many patients experience high diabetes-related distress as well as depression and anxiety symptoms, which are associated with poor diabetes self-management. As disease management is a central component in diabetes treatment, poor management enhances the occurrence of micro- and macrovascular complications. This emphasizes the relevance of reducing diabetes-related distress and providing adequate treatment options addressing the individual psychosocial burden of patients with diabetes. Since patients' perspectives diverge significantly from those of practitioners in terms of relevant treatment aspects, the patient perspective on, for example, barriers to and facilitators of diabetes treatment is crucial for adequate and effective treatment as well as improvements to self-management and therefore, needs to be further explored. OBJECTIVE: This study aims to examine diabetes-related distress, the course of distress throughout diabetes management, as well as barriers and facilitating factors in dealing with diabetes from the individual perspective of patients with type 1 and type 2 diabetes. METHODS: The study employs a mixed methods design combining qualitative and quantitative data. Semistructured interviews (N=40) will be conducted with patients with type 1 diabetes (n=20) and patients with type 2 diabetes (n=20). The primary outcomes comprise (1) diabetes-related distress, (2) the severity of distress, (3) the course of distress throughout diabetes management, (4) barriers, and (5) facilitating factors. Questionnaires will provide data on the following secondary outcomes: diabetes-related emotional distress (the Problem Areas in Diabetes scale), symptoms of depression and anxiety (Patient Health Questionnaire, German version), personality functioning (Operationalized Psychodynamic Diagnosis-Structure Questionnaire), mentalizing capacities (Mentalization Questionnaire), epistemic trust (Epistemic Trust, Mistrust and Credulity Questionnaire) and experiences of child maltreatment (Childhood Trauma Questionnaire), and the overall health status of the patient (routine medical data). RESULTS: As of April 2022, the conceptualization phase of the study was finalized. Ethics approval was received in January 2022 from the local ethics committee of the Justus Liebig University Giessen - Faculty of Medicine (AZ 161/21). CONCLUSIONS: This study will provide insights into the individual perspective of patients with type 1 and type 2 diabetes regarding their experiences with diabetes management and what they perceive to be relevant, obstructive, or beneficial. The insights gained could help further tailor diabetes treatment to the individual needs of patients with diabetes and therefore optimize diabetes self-management. TRIAL REGISTRATION: German Clinical Trial Register DRKS00024999; https://tinyurl.com/2wb4xdh8. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/38477.

["We knew it was going to be tough, but we didn't expect this!" Experiences with the inclusion of cancer patients with a migrant background and their relatives in the field of psycho-oncology]. / "Wir wussten, dass es schwierig wird, doch damit haben wir nicht gerechnet!" Erfahrungen beim Studieneinschluss von Krebspatient*innen mit Migrationshintergrund und Angehörigen im Bereich der Psychoonkologie.

BACKGROUND: The process of enrolling participants is an important component and often a time-consuming step in scientific research projects. Due to different financial, organisational and ethical framework conditions, the enrolment of participants is often a challenge. In this article, we report our experiences of enrolling patients in clinical trials made in the project "Psycho-oncological care of cancer patients with a migration background - a mixed methods study" (POM). METHODS: Participants were recruited through outpatient haemato-oncology practices. Patients and relatives were primarily made aware of the project by the treating physicians and recruited to participate in qualitative interviews. RESULTS: Nine patients and relatives were interviewed nationwide in individual qualitative interviews. In addition to the COVID-19 pandemic, there were other patient enrolment challenges. In many cases, participation was refused. The reasons included: "not interested", the use of the terms "psycho-oncology" or "person with a migration background", family denying permission to participate, no face-to-face interview due to the COVID-19 pandemic as well as too much emotional distress and deterioration of health after prior consent. DISCUSSION: Enrolling study participants from vulnerable groups for a sensitive topic such as psycho-oncology entails multiple challenges. In order to achieve successful study inclusion, regular telephone and written exchanges with the respective practice staff proved to be helpful, allowing an overview of challenges to be gained and study inclusion to be evaluated and adjusted in a timely manner. CONCLUSION: In research projects with vulnerable groups and on sensitive topics, both a target-group-specific, sensitive approach in plain language (layman's terms) and regular consultations with the persons responsible for study inclusion in care facilities should take place in order to adapt the existing procedure during the study inclusion process, if necessary.

[Psycho-Oncological Care for People with a Migration Background and their Relatives - Results of Semi-Structured Interviews with Physicians]. / Psychoonkologische Versorgung von Menschen mit Migrationshintergrund und ihren Angehörigen ­ Ergebnisse aus leitfadengestützten Einzelinterviews mit Ärztinnen und Ärzten.

BACKGROUND: People with a migration background represent a heterogeneous population group with different ethnic, cultural, and religious views and experiences. Cancer diagnosis and treatment are associated with a variety of psychosocial burdens. OBJECTIVE: The aim of this study was to investigate the current perspective of physicians regarding barriers in psycho-oncological care of people with a migration background and to analyse the assistance they need. In addition, the study also aimed to determine the need for as well as structures and processes of psycho-oncological care in order to develop recommendations for improvements in this area of medical care. METHODS: Eight physicians in private practices from the field of hematological-oncological care across Germany were interviewed individually in qualitative interviews that were digitally recorded and transcribed. The evaluation was carried out using content analysis with the software program MAXQDA 2020. RESULTS: 255 codes were identified in the main categories "Definition of people with a migration background", "Communication", "Cultural differences", "Psycho-oncological care", "Coordination and referral to psycho-oncological care services", and "Optimal psycho-oncological care". The results provided insight into daily and practical issues that arise while caring for this group of people, such as transcultural communication, barriers regarding the identification of needs, psycho-oncological continuing care, or translation by relatives. DISCUSSION: Even the identification of needs during medical treatment is associated with barriers. Screening instruments for people with a migration background in different languages and for different cultures could help the identification. In addition, networks would have to be created in order to provide psycho-oncological care to patients afterwards.

[Development of a flexible rehabilitation concept for a neurological in-patient rehabilitation program after stroke]. / Entwicklung eines flexiblen Behandlungskonzepts für die neurologische Anschlussrehabilitation nach Schlaganfall (AOK-proReha Schlaganfall).

OBJECTIVE OF THE STUDY: The aim was to develop an evidence-based treatment concept which describes a standard of performance for stroke patients in neurological follow-up rehabilitation, contracted by a statutory health insurance agency. METHOD: The treatment concept was developed in several steps: a) first of all, a systematic literature search for guidelines was conducted and an online discussion forum was established, followed by b) formation of an expert group, as well as c) two expert workshops, two working groups and several written follow-up surveys. The implementation of the concept was scientifically accompanied by project team members from the eight pilot facilities selected. RESULTS: The treatment concept in its current version provides eleven modules, ten of which refer to the rehabilitation itself and one to the interface of acute care and rehabilitation. An innovative feature of this treatment concept is that the often contradictory demands for standardization and flexibility of individual cases according to the patients' needs are brought in line by freely selectable intensity standards. However, the commitment of a total minimum of therapy times is important. Since mid-March 2018, the treatment concept has been initially implemented in various pilot facilities occupied by the AOK Baden-Württemberg. CONCLUSION: The evidence-based and consensus-based concept is characterized by being individually and flexibly applicable to the individual patient. In this way, it meets the given demands and fulfils the requirements of a heterogeneous group of patients. It is intended to incorporate the treatment concept into the routine healthcare services offered by the AOK Baden-Württemberg. In addition, the treatment concept will be the basis for the development of performance-based remuneration.

[Poststroke care in Germany : Results of an online survey of inpatient and outpatient experts in southern Germany]. / Schlaganfallnachsorge in Deutschland : Ergebnisse einer Online-Befragung stationär und ambulant tätiger Experten in Süddeutschland.

BACKGROUND: To avoid long-term care after stroke and to promote occupational reintegration as well as to continue improving rehabilitation results, a good inpatient and outpatient care is necessary. More importantly a gapless transition into aftercare is required. The aim of this study was to gather expert opinions and experiences on the current care process during rehabilitation discharge and aftercare as well as to identify barriers and to discuss possible solutions. METHODS: Clinicians from inpatient neurological rehabilitation, general practitioners and physiotherapists working in outpatient rehabilitation from Baden-Württemberg (BW) and Bavaria (BY) took part in an online survey on poststroke care (n = 77). The following topics were addressed: discharge process into follow-up care, follow-up care after rehabilitation; as well as cooperation and communication in the discharge process and during follow-up care. The online survey was conducted between 1 June 2017 and 3 August 2017 and was descriptively analyzed. RESULTS: The perceptions of inpatient and outpatient experts with respect to significance and barriers of the factors involved in the discharge process and in the aftercare were mainly discrepant. In particular, the interdisciplinary cooperation and communication were criticized. Differences were mentioned depending on the occupational group, when asked about the leading cause that makes it difficult for the patient to return to their home environment. DISCUSSION: Practitioner networks and standardized communication pathways can help to strengthen intradisciplinary and interdisciplinary cooperation and communication and thus achieve an improvement in the discharge process as well as in the aftercare system.

Post-stroke care after medical rehabilitation in Germany: a systematic literature review of the current provision of stroke patients.

BACKGROUND: Although Germany's acute care for stroke patients already has a good reputation, continuous follow-up care is still not widely available, a problem originating in the strict separation of inpatient and outpatient care. This gap in the German health care system does not just lead to patients' potential readmission to inpatient care and compromise the sustainability of what they have accomplished during medical rehabilitation; it also places a burden on caregivers. METHODS: To illustrate the current procedures on follow-up care of stroke patients in Germany, a systematic literature search was conducted to gather all available evidence. Research articles in the English or German language were searched between 2007 and 2017. Different study designs ranging from non-experimental descriptive studies, expert reports and opinions were included and categorised by two independent researchers. Relevant data was electronically searched through international and national databases and incorporated in a summary grid to investigate research outcomes and realise a narrative synthesis. RESULTS: A literature search was conducted to identify all relevant information on how current follow-up care is carried out and evaluated in Germany. We identified no systematic reviews on this topic, but included a total of 18 publications of various original studies, reviews and expert opinions. Included study populations also differed in either: experts, caregivers or stroke patients, including their viewpoints on the outpatient care situation of stroke patients; to capture their need for assistance or to investigate caregivers need and use for assistance. So far there is no standardised follow-up care in Germany, but this review reveals that multidisciplinary cooperation within occupational groups in outpatient rehabilitation is a key item that can influence and improve the follow-up care of stroke patients. CONCLUSION: This review was conducted to provide a broadly based overview of the current follow-up care of stroke patients in Germany. Both the new implementation of a standardised, discharge service that supports early support, to be initiated this year and numerous approaches are promising steps into the right direction to close the follow-up gap in German health care provision.