BACKGROUND: Delivering serious news is usually challenging for healthcare professionals and the pandemic of COVID-19 and related restrictions brought additional challenges in this process. AIMS: To explore the experience of bereaved relatives with receiving serious news from healthcare professionals during the pandemic COVID-19. DESIGN: A qualitative study using thematic analysis and a codebook approach of data collected in semi-structured interviews with bereaved relatives. SETTING/PARTICIPANTS: Data were collected from July to August 2022 in person/via phone with bereaved relatives who lost their relatives during the pandemic (from March 2020 to March 2022). Participants were recruited using a convenience sample and snowball method through social media and through one university hospital palliative care unit that invited bereaved relatives of deceased patients treated at the unit to participate in this study. RESULTS: A total of 22 participants, consisting of 4 men and 18 women, were interviewed for this study. Most of the participants were sons or daughters of individuals who had died (5 grandchildren, 14 sons/daughters, 2 spouses, 1 great-niece). Six themes were identified: Burden caused by visit ban, Fear of COVID-19, Inappropriate behaviour and communication of healthcare professionals, High need for emotional support, Need for detailed and honest communication, Tendency to make excuses for mistakes and lapses by healthcare professionals. CONCLUSIONS: Delivering serious news during a pandemic was negatively influenced by a lack of contact with patients and a lack of support and empathetic communication with staff. Overcoming these circumstances can be achieved by frequent communication using various communication tools (such as videoconferences or phone calls), and maintaining empathy and honesty in the communication process.
- Klíčová slova
- COVID-19 pandemic, Delivering bad news, End of life, Family, Health communication, Qualitative study,
- MeSH
- COVID-19 * psychologie epidemiologie MeSH
- dospělí MeSH
- komunikace MeSH
- kvalitativní výzkum * MeSH
- lidé středního věku MeSH
- lidé MeSH
- pandemie * MeSH
- rodina * psychologie MeSH
- rozhovory jako téma metody MeSH
- SARS-CoV-2 MeSH
- senioři MeSH
- sociální opora MeSH
- ztráta blízké osoby * MeSH
- Check Tag
- dospělí MeSH
- lidé středního věku MeSH
- lidé MeSH
- mužské pohlaví MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
BACKGROUND: Although emergency medical service is focused on providing acute prehospital treatment, it is often used by terminally ill patients and their informal caregivers during the last days of patient's life. Little is known about why they decide to use the emergency medical services. STUDY OBJECTIVE: The aim was to explore informal caregivers' motivation and decision-making process for calling emergency medical services for their terminally ill loved ones. METHODS: This study used a qualitative design. Data were collected by semi-structured interviews with 31 relatives of 30 patients who used the emergency medical services. Data were analyzed with NVivo software by utilizing principles of thematic analysis. RESULTS: Through the analysis, four distinct themes emerged: (1) limited availability of support from health care services; (2) insufficient planning of care; (3) decline in the health of the patient and (4) being lost and desperate. CONCLUSION: For informal caregivers, emergency medical services represented an important source of support while caring for their terminally ill loved ones due to the limited availability of other sources of help, including a lack of specialist palliative care providers. Additionally, informal caregivers had limited knowledge of the dying process and used emergency medical services for professional advice.
- MeSH
- dospělí MeSH
- kvalitativní výzkum * MeSH
- lidé středního věku MeSH
- lidé MeSH
- osoby pečující o pacienty * psychologie MeSH
- péče o umírající psychologie MeSH
- rozhodování MeSH
- rozhovory jako téma MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- umírající * psychologie MeSH
- urgentní zdravotnické služby * MeSH
- Check Tag
- dospělí MeSH
- lidé středního věku MeSH
- lidé MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
BACKGROUND: Parental involvement in the decision-making processes about medical treatment for children with life-limiting conditions is recognised as good practice. Previous research highlighted factors affecting the decision-making process, but little is known about how parents experience their participation. AIM: To explore how parents experience their participation in the process of decision-making about treatment and future care for their children with life-limiting conditions. DESIGN: A systematically constructed review using narrative synthesis. The PRISMA guidelines were followed to report the findings. Databases Medline, EMBASE, SCOPUS, CINAHL and PsycINFO were searched up to December 2023. The study protocol was registered at PROSPERO (RN CRD42021215863). RESULTS: From the initial 2512 citations identified, 28 papers met the inclusion criteria and were included in the review. A wide range of medical decisions was identified; stopping general or life-sustaining treatment was most frequent. Narrative synthesis revealed six themes: (1) Temporal aspects affecting the experience with decision-making; (2) Losing control of the situation; (3) Transferring the power to decide to doctors; (4) To be a 'good' parent and protect the child; (5) The emotional state of parents and (6) Sources of support to alleviate the parental experience. CONCLUSIONS: Parental experiences with decision-making are complex and multifactorial. Parents' ability to effectively participate in the process is limited, as they are not empowered to do so and the circumstances in which the decisions are taking place are challenging. Healthcare professionals need to support parental involvement in an effective way instead of just formally asking them to participate.
- Klíčová slova
- Parents, child, decision making, life experience, life-limiting, palliative care,
- MeSH
- dítě MeSH
- klinické rozhodování MeSH
- lidé MeSH
- rodiče * psychologie MeSH
- rozhodování * MeSH
- vyprávění MeSH
- zdravotnický personál psychologie MeSH
- Check Tag
- dítě MeSH
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- přehledy MeSH
- systematický přehled MeSH
BACKGROUND: Effective cooperation between a pediatric palliative care team (PPCT), primary treating specialists, patients and families is crucial for high quality care of children with complex life-limiting conditions. Several barriers among patients, families and treating specialists have been identified in the context of initializing pediatric palliative care. The aim of the study was to assess the experience with initial pediatric palliative care consultations from perspectives of family caregivers and treating physicians with a special focus on two innovative approaches: attendance of the treating specialist and the opportunity for parents to give feedback on the written report from the consultation. METHODS: This was a qualitative study using semi-structured interviews with family caregivers of children with malignant and non-malignant disease and their treating specialists. Framework analysis was used to guide the data collection and data analysis. RESULTS: In total, 12 family caregivers and 17 treating specialists were interviewed. Four main thematic categories were identified: (1) expectations, (2) content and evaluation, (3) respect and support from the team and (4) consultation outcomes. Parents viewed the consultation as a unique opportunity to discuss difficult topics. They perceived the attendance of the treating specialist at the initial consultation as very important for facilitating communication. Treating specialists valued the possibility to learn more about psychosocial issues of the child and the family while attending the initial palliative care consultation. All participants perceived the written report from the consultation as useful for further medical decisions. Family members appreciated the chance to give feedback on the consultation report. CONCLUSIONS: Our study identified several clinically relevant issues that can help initialize pediatric palliative care and establish effective collaboration between families and PPCT and treating specialists. Supporting treating specialists in their ability to explain the role of palliative care is important in order to reduce the risk of misunderstanding or unrealistic expectations. Developing more specific expectations seems to be one of the ways to further increase the effectiveness of initial consultations. The results of the study can be especially helpful for the initial phase of implementing pediatric palliative care and initializing the process of setting up a collaborative relationship with palliative care teams in the hospital.
- Klíčová slova
- Communication, Initial consultation, Parental feedback, Pediatric palliative care,
- MeSH
- dítě MeSH
- komunikace MeSH
- kvalitativní výzkum MeSH
- lidé MeSH
- osoby pečující o pacienty * MeSH
- paliativní péče * metody MeSH
- rodiče psychologie MeSH
- rodina psychologie MeSH
- Check Tag
- dítě MeSH
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
PURPOSE: Despite the current guidelines supporting open communication about serious news, the evidence about the impact of prognostic awareness on the quality of life in cancer patients is not clear. The aim of this study was to assess the association between quality of life and prognostic awareness in patients with advanced cancer. METHODS: This was a cross-sectional study which involved patients (n = 129) with incurable advanced cancer (estimated by oncologist using 12-month surprise question). Data were collected at oncology departments at 3 hospitals using structured interview in which patients were asked about their quality of life (using Integrated Palliative Outcome Scale-IPOS and a single-item global measure), prognostic awareness, information needs and demographics. RESULTS: Only 16% of the sample was completely aware of prognosis and 57% was partially aware. Accurate prognostic awareness was significantly associated (p = 0.02) with lower level of quality of life between (when measured by both the IPOS and the single-item scale) patients with accurate prognostic awareness (M = 37.1; 10.4) and partially aware (M = 31.9; 9.1) and unaware patients (M = 30; 7.4). Detailed analysis showed that significant difference between groups was found only for physical symptoms subscales (p = 0.002), not for emotional and communication subscales. CONCLUSION: Prognostic awareness was found to be negatively associated with physical domain of quality of life, but not with emotional and communication domains. More research is needed on personality factors that might influence the development of prognostic awareness and quality of life.
- Klíčová slova
- Advanced cancer, Palliative care, Prognostic, Prognostic awareness, Quality of life, Understanding,
- MeSH
- kvalita života * psychologie MeSH
- lidé MeSH
- nádory * psychologie MeSH
- paliativní péče MeSH
- prognóza MeSH
- průřezové studie MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
OBJECTIVES: Despite a number of studies on effectiveness of palliative care, there is a lack of complex updated review of the impact of in-hospital palliative care consult service. The objective is to update information on the impact of palliative care consult service in inpatient hospital setting. METHODS: This study was a systematic literature review, following the standard protocols (Preferred Reporting Items for Systematic Reviews and Meta-Analyses, Joanna Briggs Institute tools) to ensure the transparent and robust review procedure. The effect of palliative care consult service was classified as being associated with improvement, no difference, deterioration or mixed results in specific outcomes. PubMed, Scopus, Academic Search Ultimate and SocINDEX were systematically searched up to February 2020. Studies were included if they focused on the impact of palliative care consult service caring for adult palliative care patients and their families in inpatient hospital setting. RESULTS: After removing duplicates, 959 citations were screened of which 49 full-text articles were retained. A total of 28 different outcome variables were extracted. 18 of them showed positive effects within patient, family, staff and healthcare system domains. No difference was observed in patient survival and depression. Inconclusive results represented patient social support and staff satisfaction with care. CONCLUSIONS: Palliative care consult service has a number of positive effects for patients, families, staff and healthcare system. More research is needed on factors such as patient spiritual well-being, social support, performance, family understanding of patient diagnosis or staff stress.
- Klíčová slova
- clinical assessment, communication, hospital care, quality of life, service evaluation, symptoms and symptom management,
- MeSH
- dospělí MeSH
- hospicová a paliativní ošetřovatelská péče * MeSH
- konziliární vyšetření a konzultace MeSH
- lidé MeSH
- nemocnice MeSH
- pacienti hospitalizovaní MeSH
- paliativní péče * MeSH
- Check Tag
- dospělí MeSH
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- přehledy MeSH
- systematický přehled MeSH
OBJECTIVE: The aim of this study was to analyse longitudinal development of prognostic awareness in advanced cancer patients and their families. METHODS: This was a longitudinal cohort study, involving 134 adult cancer patients, 91 primary family caregivers and 21 treating oncologists. Key eligibility criterion for patients was life expectancy less than 1 year (estimated by their oncologists using the 12-month surprised question). Structured interviews, including tools to measure prognostic awareness, health information needs, and demographics were conducted face to face or via phone three times over 9 months. Forty-four patients completed all three phases of data collection. RESULTS: Only 16% of patients reported accurate prognostic awareness, 58% being partially aware. Prognostic awareness of both patients and family caregivers remained stable over the course of the study, with only small non-significant changes. Gender, education, type of cancer, spirituality or health information needs were not associated with the level of prognostic awareness. Family caregivers reported more accurate prognostic awareness, which was not associated with patients' own prognostic awareness (agreement rate 59%, weighted kappa 0.348, CI = 0.185-0.510). CONCLUSIONS: Prognostic awareness appears to be a stable concept over the course of the illness. Clinicians must focus on the initial patients' understanding of the disease and be able to communicate the prognostic information effectively from the early stages of patients' trajectory.
- Klíčová slova
- advance care planning, cancer, communication, family, oncology, patient care planning, prognosis, psycho-oncology,
- MeSH
- kohortové studie MeSH
- lidé MeSH
- longitudinální studie MeSH
- nádory * terapie MeSH
- osoby pečující o pacienty * MeSH
- prognóza MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
BACKGROUND: Patients with advanced disease may not be invited to participate in research based on the assumption that participation would be too burdensome for them. The aim of this study was to explore how patients with advanced disease and their relatives evaluate their experience with research participation. METHOD: This study used data from two parts of a larger project. The first dataset was a cross-sectional questionnaire study focused on priorities at the end of life. The second dataset used a longitudinal design with structured interviews on prognostic awareness. In both studies, participants evaluated their experience on a 5-point Likert scale and specified their motivation in an open-ended question. Data were collected in 6 hospitals in the Czech Republic with patients with advanced disease and life expectancy less than 1 year and their relatives. Data were analysed using non-parametric tests and thematic analysis. RESULTS: First dataset consisted of 167 patients and 102 relatives, and second dataset consisted of 135 patients and 92 relatives (in total, 496 respondents). Results were similar in both datasets, with half of the sample (53%, 48%) scoring neutral, and over 30% of the sample identified their experience as interesting. The most significant factors associated with the evaluation were religiosity (p = 0.001) and the type of diagnosis (p = 0.04). Motivation for participation was to improve care, support research, express own opinion, opportunity to talk and trusting relationship. CONCLUSIONS: Patients with advanced disease and relatives do not mind participating in palliative care research, and it can be even a positive experience for them.
- Klíčová slova
- Family, Palliative care, Patients, Research ethics, Research participation, Research subjects,
- MeSH
- hospicová a paliativní ošetřovatelská péče * MeSH
- kvalitativní výzkum MeSH
- lidé MeSH
- paliativní péče * MeSH
- průřezové studie MeSH
- průzkumy a dotazníky MeSH
- rodina MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
BACKGROUND: Making decisions about health care issues in advanced illness is difficult and the participation of patients and relatives is essential. Most of the studies on shared decision-making focus on the interaction between patient and physician (dyadic interaction), while the role of relatives in triadic decision-making remains less explored. The aim of the study was to investigate the perceived importance of the role of the patient, the physician and the relative in the decision-making from their respective perspectives. METHODS: Patients (n=154) with advanced disease, their relatives (n=95) and physicians (n=108) were asked to rank the importance of their roles on the scale from 0 to 10. Differences between respondent groups were examined by ANOVA. A typology of answers was constructed for dyadic and triadic relations and analyzed by descriptive statistics and the chi-square test. RESULTS: Physicians rated the importance of patients' role in decision-making significantly higher [mean 9.31; 95% confidence interval (CI): 9.07-9.55] than did patients themselves (mean 7.85; 95% CI: 7.37-8.32), while patients and relatives rated higher the importance of the physicians' role (mean 9.29; 95% CI: 8.98-9.59 and mean 9.20; 95% CI: 8.96-9.45, respectively) than did physicians themselves (mean 8.35; 95% CI: 0.06-8.65). In the analysis of the patient-physician dyadic interaction, patients ranked their role as equally important (44.1%) or more important (11.2%) than the role of physicians. Physicians (56.5%) thought patients should play a more important role. When relatives were included in the analysis, patients either preferred equal role of the three actors (30.2%) or prioritized the role of the physician and the relatives (16.8%), while physicians and relatives prioritized the role of the patient (54.6% and 29.0%, respectively). All results were statistically significant (P<0.05). CONCLUSIONS: Physicians and relatives tend to accentuate the active role of patients, while patients mostly prefer shared decision-making. Physicians seem to underestimate the importance of the role of relatives, compared to patients and relatives for whom the participation of relatives in the decision-making is of greater importance. A triadic decision-making model that acknowledges the importance of all three actors should be implemented in decision-making process in advanced illness.
- Klíčová slova
- Decision making, advanced disease, autonomy, end of life, palliative care, participation,
- MeSH
- chronická nemoc MeSH
- lékaři * MeSH
- lidé MeSH
- rozhodování MeSH
- vztahy mezi lékařem a pacientem MeSH
- zapojení pacienta * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
Delivering serious news presents a major challenge for clinical practice in pediatric oncology due to the complexity of the communication process and a number of aspects that influence how the serious news is delivered and received. This study aims to review and explore the aspects influencing the delivery of serious news in pediatric oncology from the perspective of physicians, parents, siblings and patients themselves. The MEDLINE, Embase, Scopus, Cochrane Library, PsycInfo and Medvik databases were systematically searched for relevant articles published from 1990 to 2017. Following the Preferred Reporting Items for Systematic Review and Meta-analysis extension for scoping reviews (PRISMA-ScR) guidelines, 36 original papers were included. Identified aspects of communication were categorized into six thematic groups: initial setting, physician's approach, information exchange, parental role, illness related aspects and age of the ill child. The importance of the aspects is perceived differently by parents, patients, siblings and physicians. This scoping review highlights that delivering serious news requires an individualized approach towards the patient and the family. Ten key objectives built upon the results of the literature review offer guidance for daily clinical practice in communication with pediatric patients and their families.
- Klíčová slova
- communication, pediatric oncology, serious news,
- Publikační typ
- časopisecké články MeSH
- Scoping Review MeSH
