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1.
J Exp Orthop ; 11(3): e12034, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38741902

ABSTRACT

Purpose: It is unclear whether different injury mechanisms lead to divergent anterior cruciate ligament (ACL) tear locations. This study aims to analyse the relationship between bone bruise (BB) distribution or depth and ACL tear location. Methods: A retrospective analysis of 446 consecutive patients with acute non-contact ACL injury was performed. Only patients with complete ACL tears verified during subsequent arthroscopy were included. Magnetic resonance imaging (MRI) was used to classify BB location, BB depth, ACL tear location and concomitant injuries (medial/lateral meniscus and medial/lateral collateral ligament). Demographic characteristics included age, gender, body mass index (BMI), type of sport and time between injury and MRI. Multiple linear regression analysis was used to identify independent predictors of ACL tear location. Results: One hundred and fifty-eight skeletally mature patients met the inclusion criteria. The presence of BB in the lateral tibial plateau was associated with a more distal ACL tear location (ß = -0.27, p < 0.001). Less BB depth in the lateral femoral condyle showed a tendency towards more proximal ACL tears (ß = -0.14; p = 0.054). Older age predicted a more proximal ACL tear location (ß = 0.31, p < 0.001). No significant relationship was found between ACL tear location and gender, BMI, type of sport, concomitant injuries and time between injury and MRI. Conclusion: ACL tear location after an acute non-contact injury is associated with distinct patterns of BB distribution, particularly involving the lateral compartment, indicating that different injury mechanisms may lead to different ACL tear locations. Level of Evidence: Level III.

2.
Article in English | MEDLINE | ID: mdl-38770689

ABSTRACT

Purpose: We aimed to gain in-depth insights into the challenges and needs of adolescents and young adults with cancer (AYA) throughout their disease to detect increased needs for support. Methods: We conducted face-to-face interviews with 15 patients 18-39 years old at the time of diagnosis of malignancies who had completed treatment at the time of the interview. The interviews were analyzed using content analysis. Results: The unexpected diagnosis of a serious illness shocked the participants, especially since many were in a life phase of transition at that time and had little knowledge about cancer and its therapy. They reported feelings of helplessness, unfairness, and insecurity triggered by side effects, divergent information from health care professionals (HCPs), or lack of information. After the end of the therapy, many AYAs were challenged by prolonged changes in their lives since they gained strength from the hope of returning to "the life before." The primary needs were social and psychological support, connecting with peers, orientation, and guidance. Conclusion: AYAs face special challenges requiring support and guidance from HCPs that should extend beyond the end of the therapy. There is a need for exchange opportunities with other AYAs. Trial Registration Number: DRKS00030277 (German Clinical Trials Register); September 27, 2022.

3.
Ann Hematol ; 103(5): 1753-1763, 2024 May.
Article in English | MEDLINE | ID: mdl-38538976

ABSTRACT

Integrating palliative care into the treatment of patients with advanced hematological malignancies (HM) remains challenging. To explore treating physicians' perspectives on current palliative care practice and to evaluate factors influencing integration, we conducted a nationwide online survey. Based on literature and expert review, the survey addressed the importance of palliative care, communication about life-threatening conditions, challenges in establishing goals of care, and factors influencing the integration of palliative care. 207 physicians treating patients with HM in Germany participated. We used standard descriptive statistics to analyze quantitative data and a content structuring approach. Most physicians considered palliative care in HM to be very important (60.6%) and discussed life-threatening conditions with more than half of their patients (52%), especially when goals of care were changed (87.0%) or when patients raised the topic (84.0%). Disease-related factors, different professional perspectives on prognosis, and patient hopes were the main barriers to changing goals of care, but collaboration with colleagues and multidisciplinary teams provided important support. Time constraints were identified as the main barrier to integrating palliative care. The majority worked well with palliative care teams. Referral processes and conditions were perceived as minor barriers. The study highlights the need to address barriers to integrating palliative care into the management of patients with advanced HM. Future research should aim at optimizing palliative care for patients with HM.


Subject(s)
Hematologic Neoplasms , Physicians , Terminal Care , Humans , Palliative Care , Hematologic Neoplasms/epidemiology , Hematologic Neoplasms/therapy , Germany/epidemiology
5.
Psychother Res ; : 1-16, 2024 Feb 28.
Article in English | MEDLINE | ID: mdl-38415369

ABSTRACT

OBJECTIVE: Given the importance of emotions in psychotherapy, valid measures are essential for research and practice. As emotions are expressed at different levels, multimodal measurements are needed for a nuanced assessment. Natural Language Processing (NLP) could augment the measurement of emotions. The study explores the validity of sentiment analysis in psychotherapy transcripts. METHOD: We used a transformer-based NLP algorithm to analyze sentiments in 85 transcripts from 35 patients. Construct and criterion validity were evaluated using self- and therapist reports and process and outcome measures via correlational, multitrait-multimethod, and multilevel analyses. RESULTS: The results provide indications in support of the sentiments' validity. For example, sentiments were significantly related to self- and therapist reports of emotions in the same session. Sentiments correlated significantly with in-session processes (e.g., coping experiences), and an increase in positive sentiments throughout therapy predicted better outcomes after treatment termination. DISCUSSION: Sentiment analysis could serve as a valid approach to assessing the emotional tone of psychotherapy sessions and may contribute to the multimodal measurement of emotions. Future research could combine sentiment analysis with automatic emotion recognition in facial expressions and vocal cues via the Nonverbal Behavior Analyzer (NOVA). Limitations (e.g., exploratory study with numerous tests) and opportunities are discussed.

6.
Support Care Cancer ; 32(3): 179, 2024 Feb 22.
Article in English | MEDLINE | ID: mdl-38383874

ABSTRACT

PURPOSE: While the unique situation of adolescents and young adults with cancer (AYAs) has become the focus of research and clinical practice, little is known about how they deal with the threat to life at a curative stage. The aim of this study was to obtain insight into the challenges, coping strategies, and needs of AYAs regarding the life-threatening nature of their diseases. METHODS: Face-to-face in-depth interviews were conducted with patients who were 18-39 years old at diagnosis. The interviews took place 2-5 years after their diagnosis. Patients who were still undergoing treatment or who were suspected of recurrence were excluded. Interviews were transcribed verbatim and analyzed using qualitative content analysis. RESULTS: Fifteen patients (mean age 27.33 years, nine females) were interviewed in a large comprehensive cancer center in Germany. Before diagnosis, AYAs had not faced their own mortality and had little experience with cancer. The sudden confrontation with a life-threatening disease and therapy, as well as experiencing the death of other AYAs, challenged them. Fear, particularly regarding recurrence and death, and the loss of trust in their own bodies were the major emotions that continued to limit them even after the end of treatment. For mothers, concern of leaving their young children alone was paramount. Coping strategies frequently mentioned were hope, avoidance, self-soothing, and valuing the experience as a chance. Health care professionals were expected to be reassuring, motivating, and open and to provide honest information based on individual and current needs. CONCLUSION: AYAs appear to cope with life-threats similarly to older patients but have additional unique challenges, including inexperience with life-threatening diseases and responsibility for young children. More research is needed in this area, although it is already evident that AYAs need honest and reassuring communication regarding the life-threat during any curable phases of their disease. Trial registration number DRKS00030277; September 27, 2022 (German Clinical Trials Register).


Subject(s)
Neoplasms , Adolescent , Adult , Female , Humans , Young Adult , Coping Skills , Fear , Health Personnel , Mothers , Neoplasms/therapy , Neoplasms/psychology , Male
7.
Article in English | MEDLINE | ID: mdl-38099971

ABSTRACT

Outcome measurement including data-informed decision support for therapists in psychological therapy has developed impressively over the past two decades. New technological developments such as computerized data assessment, and feedback tools have facilitated advanced implementation in several seetings. Recent developments try to improve the clinical decision-making process by connecting clinical practice better with empirical data. For example, psychometric data can be used by clinicians to personalize the selection of therapeutic programs, strategies or modules and to monitor a patient's response to therapy in real time. Furthermore, clinical support tools can be used to improve the treatment for patients at risk for a negative outcome. Therefore, measurement-based care can be seen as an important and integral part of clinical competence, practice, and training. This is comparable to many other areas in the healthcare system, where continuous monitoring of health indicators is common in day-to-day clinical practice (e.g., fever, blood pressure). In this paper, we present the basic concepts of a data-informed decision support system for tailoring individual psychological interventions to specific patient needs, and discuss the implications for implementing this form of precision mental health in clinical practice.

8.
BMC Palliat Care ; 22(1): 181, 2023 Nov 16.
Article in English | MEDLINE | ID: mdl-37974104

ABSTRACT

BACKGROUND: A wide variety of screening tools for the need for specialist palliative care (SPC) have been proposed for the use in oncology. However, as there is no established reference standard for SPC need to compare their results with, their sensitivity and specificity have not yet been determined. The aim of the study was to explore whether SPC need assessment by means of multi-professional case review has sufficient interrater agreement to be employed as a reference standard. METHODS: Comprehensive case descriptions were prepared for 20 inpatients with advanced oncologic disease at the University Hospital Freiburg (Germany). All cases were presented to the palliative care teams of three different hospitals in independent, multi-professional case review sessions. The teams assessed whether patients had support needs in nine categories and subsequently concluded SPC need (yes / no). Interrater agreement regarding SPC need was determined by calculating Fleiss' Kappa. RESULTS: In 17 out of 20 cases the three teams agreed regarding their appraisal of SPC need (substantial interrater agreement: Fleiss' Kappa κ = 0.80 (95% CI: 0.55-1.0; p < 0.001)). The number of support needs was significantly lower for patients who all teams agreed had no SPC need than for those with agreed SPC need. CONCLUSIONS: The proposed expert case review process shows sufficient reliability to be used as a reference standard. Key elements of the case review process (e.g. clear definition of SPC need, standardized review of the patients' support needs) and possible modifications to simplify the process are discussed. TRIAL REGISTRATION: German Clinical Trials Register, DRKS00021686, registered 17.12.2020.


Subject(s)
Inpatients , Palliative Care , Humans , Palliative Care/methods , Reproducibility of Results , Medical Oncology , Hospitals, University
9.
Ann Palliat Med ; 12(5): 900-911, 2023 Sep.
Article in English | MEDLINE | ID: mdl-37691331

ABSTRACT

BACKGROUND: Episodic breathlessness is often accompanied by panic. A vicious cycle of breathlessness-panic-breathlessness leads to emergencies with severe breathlessness and/or fear of dying. However, the interaction between episodic breathlessness and panic is poorly understood. Thus, the aim is a better understanding of the interaction between panic and episodic breathlessness to develop appropriate support for patients suffering from this symptom. METHODS: Patients suffering from episodic breathlessness due to life-limiting diseases answered questions on the characteristics of episodic breathlessness and panic-spectrum psychopathology, including underlying mechanisms. Using the Patient Health Questionnaire and the Structured Clinical Interview for DSM-IV Diagnoses (SCID), patients were screened for panic disorder. An open-ended question captured the patients' descriptions of panic during breathlessness episodes. RESULTS: Forty-six patients [52% women, mean age =66 years; standard deviation (SD) 7.3 years] provided information: 61% suffered from panic during the entire breathlessness episode, 39% experienced panic in every episode, and 25% were diagnosed with panic disorder. Exploratory data analysis was conducted. Patients with high scores in breathlessness catastrophizing thoughts experienced more panic in a breathlessness episode (P<0.001) and considered themselves more panic than low-scorers (P=0.024). There was a significant indirect effect of episodic breathlessness intensity on the panic experienced in an episode, and this effect was mediated by catastrophizing thoughts regarding breathlessness (b=0.164; 95% CI: 0.105, 0.222). Patients described in the open-ended question experiencing only panic or breathlessness, or a combination of both. Some patients managed to differentiate panic from episodic breathlessness, and used strategies to avoid panic in an episode. CONCLUSIONS: Research on treatment options for episodic breathlessness should not only focus on panic in breathlessness episodes, but also on underlying mechanisms such as catastrophizing thoughts, as they aggravate the burden.


Subject(s)
Dyspnea , Fear , Humans , Female , Aged , Male , Cross-Sectional Studies
10.
BMJ Open ; 13(8): e066948, 2023 08 31.
Article in English | MEDLINE | ID: mdl-37652589

ABSTRACT

INTRODUCTION: Although allogeneic stem cell transplantation (allo-SCT) is a curative treatment for many haematological malignancies, it is often associated with a high morbidity and mortality. Yet, little is known about the needs for supportive and palliative care among allo-SCT recipients. Moreover, targeted interventions that reduce symptom burden and suffering are still lacking. The present study aims to inform a supportive-palliative care intervention for patients with allo-SCT and their informal carers by exploring their experience and assessing their needs, especially their existential concerns, regarding four research topics: symptom burden and quality of life; coexistence of a chance for cure and a relevant risk of dying; change in goals of care; dying phase. METHODS AND ANALYSIS: This is a descriptive mixed-methods study in progress with a convergent parallel design. Data on the four research topics will be collected and analysed separately in three steps: (1) qualitative semi-structured interviews among 20 patients, 20 informal carers and 12 healthcare providers (HCPs) and focus groups among 12-24 HCPs; (2) a quantitative cross-sectional survey with validated questionnaires and self-developed questions among 100 patients, 100 informal carers and 50 HCPs; (3) a retrospective case analysis of all deceased patients who underwent an allo-SCT between 2010 and 2019, with collection of quantitative and qualitative data. The qualitative and quantitative data sets will be finally merged for comparison and interpretation. Results will serve to develop a supportive-palliative care intervention. ETHICS AND DISSEMINATION: The Ethics Commission of the Faculty of Medicine of the University of Cologne approved this study (20-1370_2). The study results will be published in peer-review journals, be presented at congresses and will be translated into clinical practice through the development of the palliative-supportive care intervention. TRIAL REGISTRATION NUMBER: DRKS00027290 (German Clinical Trials Register).


Subject(s)
Hematopoietic Stem Cell Transplantation , Palliative Care , Humans , Cross-Sectional Studies , Multicenter Studies as Topic , Quality of Life , Retrospective Studies , Surveys and Questionnaires , Research Design
11.
Eur Respir J ; 62(2)2023 08.
Article in English | MEDLINE | ID: mdl-37290789

ABSTRACT

There is increased awareness of palliative care needs in people with COPD or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD. The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the Population, Intervention, Comparison, Outcome format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation for assessing the evidence. Four additional questions were addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. The following definition of palliative care for people with COPD or ILD was agreed. A holistic and multidisciplinary person-centred approach aiming to control symptoms and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers: to consider palliative care when physical, psychological, social or existential needs are identified through holistic needs assessment; to offer palliative care interventions, including support for informal caregivers, in accordance with such needs; to offer advance care planning in accordance with preferences; and to integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available.


Subject(s)
Lung Diseases, Interstitial , Pulmonary Disease, Chronic Obstructive , Adult , Humans , Caregivers/psychology , Lung Diseases, Interstitial/therapy , Palliative Care , Pulmonary Disease, Chronic Obstructive/diagnosis , Quality of Life
12.
Infection ; 51(4): 1119-1126, 2023 Aug.
Article in English | MEDLINE | ID: mdl-36952127

ABSTRACT

PURPOSE: Symptom control for patients who were severely ill or dying from COVID-19 was paramount while resources were strained and infection control measures were in place. We aimed to describe the characteristics of SARS-CoV-2 infected patients who received specialized palliative care (SPC) and the type of SPC provided in a larger cohort. METHODS: From the multi-centre cohort study Lean European Open Survey on SARS-CoV-2 infected patients (LEOSS), data of patients hospitalized with SARS-CoV-2 infection documented between July 2020 and October 2021 were analysed. RESULTS: 273/7292 patients (3.7%) received SPC. Those receiving SPC were older and suffered more often from comorbidities, but 59% presented with an estimated life expectancy > 1 year. Main symptoms were dyspnoea, delirium, and excessive tiredness. 224/273 patients (82%) died during the hospital stay compared to 789/7019 (11%) without SPC. Symptom control was provided most common (223/273; 95%), followed by family and psychological support (50% resp. 43%). Personal contact with friends or relatives before or during the dying phase was more often documented in patients receiving SPC compared to patients without SPC (52% vs. 30%). CONCLUSION: In 3.7% of SARS-CoV-2 infected hospitalized patients, the burden of the acute infection triggered palliative care involvement. Besides complex symptom management, SPC professionals also focused on psychosocial and family issues and aimed to enable personal contacts of dying patients with their family. The data underpin the need for further involvement of SPC in SARS-CoV-2 infected patients but also in other severe chronic infectious diseases.


Subject(s)
COVID-19 , Humans , COVID-19/epidemiology , COVID-19/therapy , Palliative Care , SARS-CoV-2 , Cohort Studies , Registries
13.
J Pain Symptom Manage ; 65(3): e219-e223, 2023 03.
Article in English | MEDLINE | ID: mdl-36455801

ABSTRACT

Dyspnea is a common and highly distressing symptom in patients with advanced illnesses. Many patients continue to experience chronic dyspnea despite optimal management of underlying disease(s) and various non-pharmacologic interventions, necessitating the consideration of pharmacologic therapies for palliation of dyspnea. One commonly asked question by clinicians is whether benzodiazepines have a role in the palliation of dyspnea. In this "Controversies in Palliative Care" article, three groups of thought leaders independently answer this question. Specifically, each group provides a synopsis of the key studies that inform their thought processes, share practical advice on their clinical approach, and highlight the opportunities for future research. All three groups suggest that benzodiazepines alone do not confer a benefit for dyspnea in advanced illnesses based on existing data. They also expressed concerns about the potential adverse effects such as delirium and drowsiness and recommended against benzodiazepines as first line pharmacologic therapy. Some groups suggest that benzodiazepines may be used in highly selected patients with severe anxiety associated with dyspnea. Some investigators may also consider the adjunctive use of benzodiazepines in patients with severe dyspnea despite opioids, particularly if life expectancy is limited. Benzodiazepines also have a role in palliative sedation for refractory dyspnea in the last days of life. More research is needed to confirm the benefit of benzodiazepines in these populations.


Subject(s)
Benzodiazepines , Terminal Care , Humans , Benzodiazepines/therapeutic use , Palliative Care , Analgesics, Opioid/therapeutic use , Dyspnea/drug therapy , Dyspnea/etiology
14.
Front Psychiatry ; 13: 1026015, 2022.
Article in English | MEDLINE | ID: mdl-36386975

ABSTRACT

Background: Emotions play a key role in psychotherapy. However, a problem with examining emotional states via self-report questionnaires is that the assessment usually takes place after the actual emotion has been experienced which might lead to biases and continuous human ratings are time and cost intensive. Using the AI-based software package Non-Verbal Behavior Analyzer (NOVA), video-based emotion recognition of arousal and valence can be applied in naturalistic psychotherapeutic settings. In this study, four emotion recognition models (ERM) each based on specific feature sets (facial: OpenFace, OpenFace-Aureg; body: OpenPose-Activation, OpenPose-Energy) were developed and compared in their ability to predict arousal and valence scores correlated to PANAS emotion scores and processes of change (interpersonal experience, coping experience, affective experience) as well as symptoms (depression and anxiety in HSCL-11). Materials and methods: A total of 183 patient therapy videos were divided into a training sample (55 patients), a test sample (50 patients), and a holdout sample (78 patients). The best ERM was selected for further analyses. Then, ERM based arousal and valence scores were correlated with patient and therapist estimates of emotions and processes of change. Furthermore, using regression models arousal and valence were examined as predictors of symptom severity in depression and anxiety. Results: The ERM based on OpenFace produced the best agreement to the human coder rating. Arousal and valence correlated significantly with therapists' ratings of sadness, shame, anxiety, and relaxation, but not with the patient ratings of their own emotions. Furthermore, a significant negative correlation indicates that negative valence was associated with higher affective experience. Negative valence was found to significantly predict higher anxiety but not depression scores. Conclusion: This study shows that emotion recognition with NOVA can be used to generate ERMs associated with patient emotions, affective experiences and symptoms. Nevertheless, limitations were obvious. It seems necessary to improve the ERMs using larger databases of sessions and the validity of ERMs needs to be further investigated in different samples and different applications. Furthermore, future research should take ERMs to identify emotional synchrony between patient and therapists into account.

15.
Palliat Med ; 36(8): 1285-1295, 2022 09.
Article in English | MEDLINE | ID: mdl-36062725

ABSTRACT

BACKGROUND: The SARS-CoV-2 pandemic is a constant challenge for health care systems, also in Germany. Care of seriously ill and dying people and their relatives is often neglected and suffering increased due to sub-optimal symptom management, visiting restrictions and lonely dying. The project "Palliative Care in Pandemics (PallPan)" intended to develop a national strategy including evidence- and consensus-based recommendations for the care of seriously ill and dying people and their relatives during pandemic times in Germany. AIM: To reach consensus on evidence-based recommendations for the care of seriously ill and dying people and their relatives in pandemics. METHODS: Three-step consensus process comprising two online Delphi rounds and an expert workshop conducted from April to June 2021. One hundred twenty experts from various areas of healthcare, administration, and politics in Germany were included. RESULTS: During the consensus-process, pre-formulated evidence-based recommendations were refined step-by-step. This resulted in consensus on 33 recommendations on the topics of "supporting patients and their relatives," "supporting staff," and "supporting and maintaining structures and provision of palliative care." The recommendations address professional carers and various responsibilities on a governmental, federal state and municipal level, and in healthcare facilities. CONCLUSION: We provide evidence and consensus-based recommendations for the care of seriously ill and dying people and their relatives in pandemics in Germany. This is an important step towards a pandemic preparedness and hopefully improves the future palliative care response to pandemics.


Subject(s)
COVID-19 , Pandemics , Consensus , Delphi Technique , Humans , Palliative Care , SARS-CoV-2
16.
PLoS One ; 17(7): e0271822, 2022.
Article in English | MEDLINE | ID: mdl-35905129

ABSTRACT

BACKGROUND: COVID-19 is a severe disease with a high need for intensive care treatment and a high mortality rate in hospitalized patients. The objective of this study was to describe and compare the clinical characteristics and the management of patients dying with SARS-CoV-2 infection in the acute medical and intensive care setting. METHODS: Descriptive analysis of dying patients enrolled in the Lean European Open Survey on SARS-CoV-2 Infected Patients (LEOSS), a non-interventional cohort study, between March 18 and November 18, 2020. Symptoms, comorbidities and management of patients, including palliative care involvement, were compared between general ward and intensive care unit (ICU) by univariate analysis. RESULTS: 580/4310 (13%) SARS-CoV-2 infected patients died. Among 580 patients 67% were treated on ICU and 33% on a general ward. The spectrum of comorbidities and symptoms was broad with more comorbidities (≥ four comorbidities: 52% versus 25%) and a higher age distribution (>65 years: 98% versus 70%) in patients on the general ward. 69% of patients were in an at least complicated phase at diagnosis of the SARS-CoV-2 infection with a higher proportion of patients in a critical phase or dying the day of diagnosis treated on ICU (36% versus 11%). While most patients admitted to ICU came from home (71%), patients treated on the general ward came likewise from home and nursing home (44% respectively) and were more frequently on palliative care before admission (29% versus 7%). A palliative care team was involved in dying patients in 15%. Personal contacts were limited but more often documented in patients treated on ICU (68% versus 47%). CONCLUSION: Patients dying with SARS-CoV-2 infection suffer from high symptom burden and often deteriorate early with a demand for ICU treatment. Therefor a demand for palliative care expertise with early involvement seems to exist.


Subject(s)
COVID-19 , Aged , COVID-19/epidemiology , COVID-19/therapy , Cohort Studies , Humans , Intensive Care Units , Patients' Rooms , Registries , SARS-CoV-2
17.
BMC Palliat Care ; 21(1): 63, 2022 May 03.
Article in English | MEDLINE | ID: mdl-35501750

ABSTRACT

BACKGROUND: The SARS-CoV-2 pandemic has presented major challenges to the health system. Despite high acute case numbers, patients without Covid-19 still need to be cared for. Due to the severity of the disease and a possible stressful overall situation, patients with palliative care needs also require comprehensive care during pandemic times. In addition to specialized palliative care facilities, this also takes place in non palliative care wards. In order to ensure this general palliative care also in pandemic times, the experience of the staff should be used. The aim of this paper is to examine challenges and possible solutions for general palliative care inpatients in relation to the care of seriously ill and dying patients and their relatives. METHODS: Qualitative semi-structured focus groups were conducted online for the study. Participants were staff from intensive care or isolation wards or from units where vulnerable patients (e.g. with cognitive impairment) are cared for. The focus groups were recorded and subsequently transcribed. The data material was analysed with the content structuring content analysis according to Kuckartz. RESULTS: Five focus groups with four to eight health care professionals with various backgrounds were conducted. Fifteen main categories with two to eight subcategories were identified. Based on frequency and the importance expressed by the focus groups, six categories were extracted as central aspects: visiting regulations, communication with relatives, hygiene measures, cooperation, determination of the patients will and the possibility to say good bye. CONCLUSION: The pandemic situation produced several challenges needing specific solutions in order to manage the care of seriously ill and dying patients. Especially visiting needs regulation to prevent social isolation and dying alone. Finding alternative communication ways as well as interprofessional and interdisciplinary cooperation is a precondition for individualised care of seriously ill and dying patients and their relatives. Measures preventing infections should be transparently communicated in hospitals.


Subject(s)
COVID-19 , Palliative Care , Health Personnel/psychology , Humans , Inpatients , Palliative Care/psychology , Pandemics , SARS-CoV-2
18.
Palliat Med ; 36(4): 708-716, 2022 04.
Article in English | MEDLINE | ID: mdl-35350933

ABSTRACT

BACKGROUND: Since the onset of the SARS CoV2 pandemic, protective and isolation measures had a strong impact on the care and support provided to seriously ill and dying people at the end-of-life. AIM: Exploring bereaved relatives' experiences of end-of-life care during the SARS-CoV2 pandemic. DESIGN: Qualitative interview study with bereaved relatives. PARTICIPANTS: Thirty-two relatives of patients who died during the pandemic, regardless of infection with SARS-CoV2. RESULTS: Three core categories were identified: needs, burden and best practice. Relatives wished for a contact person responsible for providing information on the medical and mental condition of their family members. The lack of information, of support by others and physical closeness due to the visiting restrictions, as well as not being able to say goodbye, were felt as burdens and led to emotional distress. However, case-by-case decisions were made and creative ways of staying in touch were experienced positively. CONCLUSIONS: Our results indicate that the strong need for closeness when a family member was dying could not be met due to the pandemic. This led to suffering that can be prevented. Visits need to be facilitated by making considered decisions on a case-by-case basis. For easy communication with relatives, approaches should be made by healthcare professionals and support for virtual communication should be offered. Furthermore, the results of the study can help to implement or develop ideas to enable dignified farewells even during pandemics.


Subject(s)
COVID-19 , Pandemics , Family , Humans , Prisons , Qualitative Research , RNA, Viral , SARS-CoV-2
19.
Ann Palliat Med ; 11(7): 2225-2234, 2022 Jul.
Article in English | MEDLINE | ID: mdl-35306824

ABSTRACT

BACKGROUND: Episodic breathlessness is a common form of chronic breathlessness that is highly distressing for patients with diseases such as chronic obstructive pulmonary disease (COPD) and lung cancer in advanced stages. Little is known about the experiences of informal caregivers who care for patients with episodic breathlessness. The present study aims to explore and describe the experiences and coping strategies of informal caregivers who deal with this challenging condition. METHODS: This is a qualitative study based on semi-structured in-depth interviews with informal caregivers of patients suffering from episodic breathlessness. The interviews were recorded, transcribed verbatim, and analyzed using Mayring's qualitative content analysis. RESULTS: Thirteen informal caregivers were interviewed. The results suggest that the distress patients often experience during episodic breathlessness causes concern and anxiety among most informal caregivers. Particularly stressful for them is their own helplessness and uncertainty, especially when episodic breathlessness occurs for the first time. Over time, all informal caregivers interviewed had developed strategies to cope with the patients' episodic breathlessness. These strategies can be divided into two categories: (I) strategies directed at the patient to provide appropriate support during episodic breathlessness, and (II) strategies aimed at coping with the caregiver's own emotional burden. Despite these strategies, the need for professional support for informal caregivers often remains unmet, especially during the initial onset of episodic breathlessness. CONCLUSIONS: Informal caregivers of patients with chronic breathlessness need support and advice on how to better cope with episodic breathlessness. Both patient and caregiver support need to be part of a comprehensive approach, e.g., as part of a breathlessness service.


Subject(s)
Caregivers , Pulmonary Disease, Chronic Obstructive , Adaptation, Psychological , Caregivers/psychology , Dyspnea/etiology , Humans , Pulmonary Disease, Chronic Obstructive/complications , Qualitative Research
20.
Palliat Med ; 36(2): 332-341, 2022 02.
Article in English | MEDLINE | ID: mdl-35176931

ABSTRACT

BACKGROUND: During the COVID-19 pandemic, it has become apparent that palliative care has dynamically adapted to the care of dying patients with and without COVID-19 and has developed new forms of collaboration. Evaluation is needed to assess which innovations should be integrated into future pandemic management. AIM: To explore the experiences of stakeholders and staff in implementing and operating an ad hoc unit delivering acute palliative care. What lessons were learned? DESIGN: Qualitative interview study (German Clinical Trials Register; identifier 22,473) with qualitative content analysis. SETTING/PARTICIPANTS: During the first wave of the pandemic, the University Medical Center Freiburg (Germany) established an ad hoc unit delivering acute palliative care for COVID-19 patients likely to die. Nurses from non-palliative areas and the specialist palliative care team formed a new team working together there. Twenty-nine individuals from management and staff of this unit were interviewed. RESULTS: Patient care and teamwork were rated positively. Joint familiarization, bedside teaching, and team/management support were evaluated as core elements for success. Challenges for the nurses from non-palliative settings included adapting to palliative care routines and culture of care. The palliative care team had to adjust the high standards of palliative care to pandemic conditions. Due to sufficient hospital-wide capacity, only three COVID-19 patients were treated, significantly fewer than anticipated at planning. CONCLUSIONS: Results show the feasibility of an ad hoc COVID-19 acute palliative care unit. In the event of capacity constraints, such a unit can be a viable part of future pandemic management.


Subject(s)
COVID-19 , Humans , Palliative Care , Pandemics , Qualitative Research , SARS-CoV-2 , Tertiary Care Centers
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