Christine Holmberg’s research while affiliated with Brandenburg University of Technology Cottbus - Senftenberg and other places

Background Organizing healthcare becomes ever more complex for people with chronic conditions. Additionally, a distinct separation of inpatient and outpatient care makes it even more difficult to provide coordinated and continuous care across sectors in Germany. Our interview study aimed to identify difficulties and unmet needs along the care continuum of patients with lung cancer and stroke in Germany. Methods Data were collected by qualitative interviews. A total of 40 participants with lung cancer (n=20) and stroke (n=20) were interviewed in the metropolitan region of Berlin, Germany. Data were interpreted through thematic analysis. Results We identified five main categories of difficulties and unmet needs: 1. Bureaucracy, 2. Unmet information needs, 3. Feeling left alone, 4. Difficulties and unmet needs in healthcare institution settings, and 5. Psychological and emotional stress. Results of our study show a high overlap between the experienced difficulties of both groups of patients. These include, in particular, bureaucratic obstacles, the lack of detailed information, poor coordination of care, and the feeling of being alone with the disease and its consequences. Conclusion Patients with complex care trajectories seem to have great need for coordinative, social, bureaucratic, and emotional support and these support topics are largely independent of the index disease. Hence, our research suggests that support offers focusing on social and coordination needs do not have to be disease-specific but can rather cover general needs of people with complex care situations.

Background Digitalization is steadily advancing on a global scale, exerting a profound influence on health care systems. To facilitate acceptance of the digital transformation, guiding principles emphasize the need for digital health structures to be person-centered and promote high-quality care. This paper examines the implementation challenges within the German health care system, with a particular focus on how change initiatives engage with existing infrastructures and organizational modes of health care delivery. This approach provides a framework for analyzing how established infrastructure determines new developments while also highlighting the procedural dynamics of change and the integration of innovations within existing information infrastructures. These established infrastructures are referred to as the installed base. Objective The aim of the study is to examine the installed base encountered by the digital transformation within the German health care system by investigating information exchange practices among general practitioners (GPs) and their communication with other health care actors. Methods A mixed methods study including a quantitative survey and semistructured qualitative interviews was conducted. The study sample consisted of all publicly accessible GP practices (N=1348) situated in the state of Brandenburg, Germany. The survey captured demographic data, communication practices, and perceived barriers to digitalization. The interviews explored experiences with digital applications. Quantitative data were analyzed using R (R Foundation for Statistical Computing), and qualitative data were managed and analyzed in MAXQDA (VERBI Software GmbH) through content analysis. Results A total of 250 questionnaires (response rate 18.5%) and 10 interviews with GPs were included in the analysis. GPs primarily use the telephone (n=138, 55.2%, SD 24.64), fax (n=109, 43.9%, SD 25.40), or post (n=50, 20.2%, SD 9.46) to exchange information. Newer digital communication channels such as messenger applications (n=2, 0.8%, SD 0.72) and Communication in the Medical Sector (n=1, 0.5%, SD 0.97) play a minor role. We identified three intertwined clusters displaying diverse barriers to the digitalization of GPs’ communication practices: (1) incompatibility issues and technical immaturity, (2) lack of knowledge and technical requirements, and (3) additional technical, financial, and time-related burdens. These barriers were perceived as significant deterrents to the adoption of digital tools, with older GPs more reliant on analog systems and more likely to view digitalization as a source of frustration. Conclusions Newly established communication channels in the German health care system compete with the existing information infrastructure, which is deeply integrated into GPs’ practice routines and care processes. However, this installed base has been largely overlooked in digital transformation initiatives. While newer channels hold potential, they often malfunction and are incompatible with long-established, individualized GP workflows. Addressing these issues rather than imposing coercive measures is crucial for increasing adoption. Incorporating health care providers’ perspectives and aligning new channels with established routines can prevent frustration and facilitate a smoother digital transformation.

Background: When seeking advice on allergy prevention in early childhood (Early Childhood Allergy Prevention, ECAP), parents often turn to health and social care providers, such as paediatricians, midwives, and family centres. However, these actors fulfil various, often care-related, roles, and cannot be considered 'health information pro-viders' by default. In addition, although the scientific evidence for ECAP is often known by health professionals, it is not actively communicated. In this study protocol, we describe the planned procedure for the development and implementation of a process to communicate ECAP information to parents, with a focus on reaching out to those from migrant communities. Thereby, we also aim to contribute to the understanding of how to design more robust approaches to deliver health information. Methods: We have chosen the Implementation Research Logic Model as our framework for a multi-stage process. Firstly, we will map regional and local health and social care providers to find potential providers of ECAP information. We will then approach actors from each mapping category for qualitative interviews to assess facilitators and barriers to implementation. Next, we will define actions to ease the implementation process, develop exemplary ECAP information materials for parents, and deliver these to pre-selected health and social care individuals and organizations. Each step will be adapted to meet the needs and preferences of culturally and linguistically diverse populations. Finally, the process will be evaluated for key implementation outcomes (e.g., acceptability, feasibility, effectiveness) by interviewing information providers and surveying information recipients. Discussion: From a Public Health perspective, studies seem warranted that investigate how evidence from health research may be effectively communicated to the public, rather than merely focusing on, e.g., intervention development. Also, it has often been highlighted that the dissemination of health information needs to better target those who face the greatest difficulties when seeking advice, i.e. individuals/parents who recently migrated. ECAP is a good use case, as scientific evidence is constantly evolving, and the communication of information is hampered by low awareness of high quality sources.

Social integration is considered beneficial for people's health. However, research shows mixed results for the older population and often lower social participation and related health-outcomes for rural areas, rendering rural-living seniors a potentially vulnerable group. This article explores current opportunities, challenges, and possible improvements for seniors' public social participation in the structurally weak and fast aging Uckermark county in northeastern Germany. With a mixed-methods approach, we geocoded public data on social clubs, conducted expert interviews, and applied a qualitative content analysis to gain insights into the structural conditions and social mechanisms of seniors' social participation in the Uckermark. Geocoding revealed that over 60% of the settlements have at least one social club and experts deemed the number of social activity offers sufficient. However, they reported challenges relating to declining physical health, poverty, infrastructural deficits, difficulties in outreach, a lack of motivation, conflicting relationships, regional mentality, and a struggle for sustainability. They suggested prioritizing rural seniors' lives in the political agenda, increased networking and sustainable reorganization of regional stakeholders, and providing tailored participation offers. The interviews highlight the interconnectedness of different groups and historically shaped socioeconomic developments in the rural community. Relating these results to international studies and aging theories, we conclude that there are common structural challenges in rural regions that foster seniors' social disengagement. However, dynamic and regionally specific relationships, norms, and preferences seem to play a major role in seniors' selective (dis-)engagement in public social activities and deserve greater attention in the provision and evaluation of participation offers.

Die Forderung nach einem Mehr an Partizipation ist allgegenwärtig. Dies gilt auch für die Gesundheitsforschung bzw. die Entwicklung und Regulierung neuer Gesundheitstechnologien. Mit Partizipation sind viele Hoffnungen verbunden, darunter die Demokratisierung und Bedürfnisorientierung von Entscheidungsprozessen. Häufig bleibt jedoch unklar, wie sich Beteiligung verantwortungsvoll ausgestalten lässt. Offen ist beispielsweise, wie mit Zugangsbarrieren oder Machtgefällen umgegangen werden soll. Die Beiträge dieses Bandes beleuchten die theoretischen Grundlagen einer Ethik der Partizipation, geben aber auch Hinweise zur verantwortungsvollen Umsetzung aus der Praxis.

Ductal carcinoma in situ (DCIS) of the female breast is treated with surgery possibly followed by radiotherapy (RT) and/or adjuvant hormonal therapy despite their known long-term side effects. Since not every DCIS will progress into an invasive breast cancer (IBC), disease progression and de-escalation of treatment is an important topic of current research. During 2007–2020, 3905 individuals with a DCIS diagnosis were reported to the cancer registry of Brandenburg and Berlin. We selected 3424 women who were cancer-free prior to DCIS diagnosis and without synchronous diagnoses of DCIS or ipsilateral IBC (iIBC). The objective was to describe changes over time in DCIS treatment and risk of developing iIBC by treatment. We observed decreasing proportions of mastectomy, breast-conserving surgery (BCS) with RT, and standard versus hypofractionated RT over time. During a median follow-up of 3.8 years, 105 women developed iIBC. Compared with BCS + RT with standard fractionation (54.9%, 1878/3424, 53 iIBC events), hazard ratios (HR) for ilBC were 0.72 (95% confidence interval [CI] 0.26, 1.99; 4 events) for BCS + hypofractionated RT, 0.70 (95% CI 0.33, 1.41; 11 events) for BCS alone, and 0.83 (95% CI 0.50, 1.37; 26 events) for mastectomy. Analyses were adjusted for DCIS size, grade, residual tumor status and ECOG score. We observed a de-escalation of treatment over time, with fewer mastectomies, less RT, and more hypofractionation of RT. No substantial differences in risk of iIBC were observed between these treatments. There is a need to evaluate DCIS treatment de-escalation in larger cohorts with longer follow-up.

https://www.transcript-verlag.de/media/pdf/b0/69/55/oa9783839469262.pdf

Background To investigate awareness, use, and perceptions of the patient guidelines (PGs) of the German Guideline Program in Oncology (GGPO) and to explore general preferences regarding cancer information among patients and healthcare providers (HCPs). Methods Two cross-sectional surveys among patients with cancer (November 2020—May 2021) and among HCPs (April -June 2021) were set up as anonymised, self-administered, semi-structured online surveys, including open-ended questions. Data were analysed with descriptive statistics and qualitative thematic analysis. Patients were recruited from national self-help organisations and certified cancer centres located all over Germany. HCPs were recruited from cancer centres, scientific medical societies and guideline groups. Results Of 816 participating patients, 45% were aware of the GGPO-PGs, while 55% of the 455 participating HCPs were aware of them. Of those aware of the GGPO-PGs, 65% of patients and 86% of HCPs perceived them as helpful, while 95% in both groups saw them as comprehensive. Seventy-five percent of patients and 85% of HCPs were satisfied with the GGPO-PGs, 22%/13% were partially satisfied, and 3%/2% were rather/not at all satisfied. In addition to self-help organisations, physicians and hospitals were perceived as central in distributing the GGPO-PGs. More patients (78%) than HCPs (56%) stated a preference for detailed information, although the wish for concise information – e.g. decision aids – was concurrently expressed by the majority of all participants. Thematic analysis showed that up-to-dateness, trustworthiness, and supportive messaging are important properties for PGs. Conclusions HCPs found the GGPO-PGs helpful, but awareness was low, which suggests that dissemination should be improved. This is also true for patients; however, further research needs to be done to increase the helpfulness of PGs for patients. Oncological PGs seem to be needed in different formats according to patients’ situational needs. Theory-driven research should investigate how to best frame patient information in a supportive way.