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result(s) for
"Schoerger, Berenike"
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How to talk about death? A cross-sectional survey on patients’, informal caregivers’ and health care professionals’ views in the setting of allogenic hematopoietic stem cell transplantation
by
Weliwitage, Jithmi
,
Ahn, Johann
,
Pralong, Anne
in
Caregivers
,
Cognitive ability
,
Cognitive impairment
2026
Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is a potentially curative treatment, which carries a high risk of complications and mortality, highlighting the necessity of discussions about life threat. This study explores the perspectives of patients, informal caregivers (ICs), and healthcare professionals (HCPs) regarding the timing, content, and challenges of these discussions. Multicenter cross-sectional survey in comprehensive care centers across Germany, involving patients with allo-HSCT, ICs, and HCPs. Questionnaires assessed perceived concerns about life threat, communication needs, and attitudes toward death. Statistical analyses included descriptive statistics, group comparisons, and multivariate logistic regressions. A total of 61 patients, 31 ICs and 125 HCPs participated in this study. Patients and ICs had a high need for discussion about life threat at diagnosis, which was corroborated by HCPs. At further time points in the transplant trajectory, there were more discrepancies between patients‘/ICs‘ and HCPs’ perceptions towards conversations about life threat. While 61.7% of patients preferred having their ICs present during discussions, ICs often felt overlooked, with only 50% finding conversations with HCPs helpful. HCPs’ avoidance of death was associated with a reduced likelihood of reporting a need for conversation in patients in the event of severe complications. These findings highlight a discrepancy between patients’ and ICs’ preferred timing for conversations about life threat and HCPs’ perceptions of when patients actually express such a need. To bridge this gap, earlier and ongoing conversations are essential. Training programs should address HCPs’ discomfort in discussing prognosis and improve interdisciplinary teamwork to standardize end-of-life communication.
Trial registration number
: DRKS00027290 (German Clinical Trials Register) on 10.01.2022.
Journal Article
A cross-sectional survey on health care professionals’ approaches, challenges, and support needs when addressing life threat with recipients of an allogeneic hematopoietic stem cell transplantation and with their relatives
by
Reimer, Alinda
,
Schoerger, Berenike
,
Weliwitage, Jithmi
in
Adult
,
Allografts
,
Attitude of Health Personnel
2025
Patients treated with an allogeneic hematopoietic stem cell transplantation (allo-SCT) face a significant mortality risk, which might trigger existential distress. We aimed to investigate how hematology health care professionals (HCPs) address life-threatening conditions with allo-SCT recipients and their relatives, and what are challenging and supportive aspects. We conducted a multicenter cross-sectional survey, assessing: (1) HCPs’ approaches to address life threat, using a self-developed questionnaire with 19 items categorized in four dimensions (proactive, cautious, reactive, avoiding), (2) challenges/support needs, using self-developed multiple-choice questions, and (3) personal attitudes towards death (Death Acceptance subscale of the Life Attitude Profile-Revised; Death Attitude Profile-Revised). Statistics included association, regression and exploratory factor analysis. We included 104 participants (52 physicians, 45 nurses, 7 psycho-oncologists) from the settings of SCT, general hematology and intensive care. Physicians predominantly addressed life threat proactively, while nurses tended to raise the topic when prompted by patients or a clinical worsening. Overall, 10% of HCPs stated to avoid the topic, even in case of a high risk of death. HCPs’ approaches correlated weakly with their attitudes towards death. A main challenge was to talk with patients/relatives repressing the risk of death (72%). More time resources for these conversations (71%), and mentoring by palliative-care specialists (67%) or psycho-oncologists (65%) were the most frequent support needs. This comprehensive survey reveals strong differences between professions in addressing life threat, and possible influence from personal death attitudes. Further confirmatory research in larger samples is needed to tailor communication trainings on life threat in multi-professional teams. Registration:German Clinical Trials Register, DRKS00027290, date of registration: 2022-01-10.
Journal Article
The life threat in hematopoietic allogeneic stem cell transplantation - an interview and focus group study on health care professionals’ perspectives
by
Reimer, Alinda
,
Schoerger, Berenike
,
Pralong, Anne
in
Professionals
,
Stem cell transplantation
2024
Understanding healthcare professionals’ (HCPs) experiences with patients undergoing hematopoietic allogeneic stem cell transplantation (allo-HSCT) is crucial, given its dual nature of offering a hope for cure which on the other hand is accompanied by a high risk for morbidity and mortality. Yet, how HCPs experience their patients’ existential threats remains unexplored. Qualitative thematic content analysis was employed to comprehend these experiences. This involved conducting three focus groups and 11 individual in-depth interviews with nurses and hematologists. We found that HCPs struggled to balance curative goals and the therapy’s risks, while attempting to maintain their patients’ hopes. The unpredictability of patient trajectories and their suffering burdened HCPs. Despite occasional disagreements within the team, (inter-)professional exchanges remained a crucial ressource, especially in addressing the patients’ potential life threat. Team meetings and palliative care specialist supervisions were emphasized as vital for managing these challenges. HCPs sought support in communicating with patients about death-related issues and managing the transition from a curative to a palliative goal of care. Our research underscores the need for targeted support for HCPs and lays a groundwork for addressing their challenges.Trial registration number DRKS00027290 (German Clinical Trials Register).Date of trial registration January 10th, 2022.
Journal Article
Navigating What Is Not Known—Patients’ Experience of the Life Threat Connected to Allogeneic Stem Cell Transplantation
2025
Background: Allogeneic stem cell transplantation (allo‐SCT) represents a firmly established therapeutic option for patients facing (non‐)malignant haematological diseases. Despite its curative potential, however, this treatment is associated with substantial morbidity and mortality rates as well as a decreased quality of life. Given this context, a scientific void needs to be addressed: How do patients deal with the existential situation of being exposed to a life threat despite the curative potential of their treatment? This study aims to explore the patients’ experiences considering their life threat in the context of the allo‐SCT. Methods: Qualitative semistructured, in‐depth interviews were conducted with patients treated by allo‐SCT over the course of transplantation (before, during or after hospitalization). Interview data were interpreted using category‐based qualitative content analysis. Results: Seventeen interviews were conducted. Results revealed a strong focus on hope and avoidance of dealing with the life threat. At the same time, challenges due to the lack of alternative treatments and the uncertain course were highlighted. The data revealed that patients wished to receive support by healthcare professionals, their carers and their social environment in general. Beyond that, patients desired to obtain honest information within an open discussion about a realistic prognosis and risk of treatment and course of disease. Conclusion: The findings emphasize an interplay between hope, avoidance and psychological distress in the face of the patients’ life threat. To assist allo‐SCT recipients in navigating their life threat during treatment, it is desirable to establish avenues that provide adequate support. Trial Registration: German Registry of Clinical Trials: DRKS00027290
Journal Article