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: 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
BACKGROUND: Patients with advanced kidney disease suffer from burdensome symptoms, which should be assessed by valid and reliable patient-reported outcome measures. This study aimed to provide a translation, cultural adaptation, and validation of the Czech version of the IPOS-r. METHODS: The IPOS-r was translated to Czech and culturally adapted using cognitive interviews. During the validation phase, patients and staff in dialysis centres and outpatient renal clinics completed the IPOS-r. Internal consistency was tested with Cronbach's alpha, its reliability via intraclass correlation coefficient for total IPOS-r score, and weighted Kappa (for test-retest and interrater reliability of individual items). Convergent validity was tested with Spearman correlation to Kidney Disease Quality of Life Survey-Short Form 1.2 (KDQOL-SF 1.2). We assessed sensitivity to change using a distribution-based approach. RESULTS: Two sets of translators independently performed forward and backward translations of the IPOS-r. Ten patients and ten health care professionals participated in cognitive pre-testing. The sample size for validation included 88 patients (mean age 66 ± SD13.8; 58% men) who were treated with haemodialysis (70.5%), home haemodialysis (5.5%), peritoneal dialysis (3%), and conservative management (21%). Cronbach's alpha was 0.72, and the intraclass correlation was 0.84 for test-retest reliability and 0.73 for interrater reliability. The IPOS-r correlated with KDQOL-SF 1.2 had a rho between 0.4-0.8 for most of the IPOS-r items, showing good convergent validity. The IPOS-r measure is feasible and takes 9 minutes to complete. Patients who reported a change in health status after 1 month demonstrated a total IPOS-r score change of eight points in both positive and negative directions. CONCLUSIONS: The process of translation and cultural adaptation of the IPOS-r was successful, and the Czech IPOS-r measure is a valid and reliable tool. The Czech IPOS-r can be used to assess symptoms in patients with advanced chronic kidney disease. TRIAL REGISTRATION: GAUK [82121].
- Klíčová slova
- Advanced kidney disease, IPOS-renal, Outcome measurement, Patient-reported outcome measure, Reliability, Symptom assessment, Validity,
- MeSH
- kvalita života * psychologie MeSH
- lidé MeSH
- nemoci ledvin * psychologie MeSH
- průzkumy a dotazníky MeSH
- psychometrie MeSH
- reprodukovatelnost výsledků MeSH
- senioři MeSH
- srovnání kultur MeSH
- Check Tag
- lidé MeSH
- mužské pohlaví MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Česká republika MeSH
BACKGROUND: To support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005. METHODS: We analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care. RESULTS: The booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care. CONCLUSIONS: We identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.
- Klíčová slova
- Decision aid, Dementia, Education, End of life, Family caregivers, Nursing homes, Palliative care,
- MeSH
- brožury MeSH
- demence * terapie MeSH
- komfort pacienta MeSH
- lidé MeSH
- osoby pečující o pacienty MeSH
- paliativní péče metody MeSH
- péče o umírající * MeSH
- rodina MeSH
- smrt MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články 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: It is recommended that patients with progressive neurological disease (PND) receive general and specialized palliative care. The purpose of this study was to determine the effect of neuropalliative care on quality of life (QoL) and satisfaction with provided care in both patients with PND in advanced stages of disease and their family caregivers. METHODS: The sample consisted of 151 patients with PND and 140 family caregivers. The PNDQoL questionnaire was used for data collection. Patients and family caregivers completed the questionnaires both before and 3 months after the intervention. RESULTS: Before intervention, there were no statistically significant differences in the individual domains of QoL in patients and family caregivers in either the intervention or the control group. After intervention, differences were identified in the sample of patients in the domains of symptoms burden (p < 0.001), emotional (p < 0 .001), social functioning (p = 0.046), spiritual area (nonreligious) (p = 0.050), and in QoL. In the sample of family caregivers, there were differences in the domains of symptoms burden (p < 0.001), emotional functioning (p = 0.016), spiritual area (nonreligious) (p = 0.042), and in the assessment of health (p = 0.002), and QoL (p = 0.002). Patients and family caregivers from the intervention group evaluated their satisfaction with the quality of care provided significantly more positively in all five analyzed domains. CONCLUSION: The provision of neuropalliative care to patients with advanced stages of PND helped to maintain and slightly improve their QoL, and symptoms burden, and resulted in a more positive assessment of satisfaction with the quality of care provided.
- Klíčová slova
- Palliative care, Quality of life, Subjective assessment, Symptoms burden,
- MeSH
- dospělí MeSH
- kvalita života psychologie MeSH
- lidé středního věku MeSH
- lidé MeSH
- nemoci nervového systému komplikace ošetřování MeSH
- neurologické ošetřovatelství normy statistika a číselné údaje MeSH
- osoby pečující o pacienty psychologie MeSH
- paliativní péče metody psychologie normy MeSH
- průzkumy a dotazníky MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- spokojenost pacientů * 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: Outcome measurement is an essential part of the evaluation of palliative care and the measurements need to be reliable, valid and adapted to the culture in which they are used. The Integrated Palliative Outcome Scale (IPOS) is a widely used tool for assessing personal-level outcomes in palliative care. The aim of this study was to provide Czech version of IPOS and assess its psychometric properties. METHODS: Patients receiving palliative care in hospice or hospitals completed the IPOS. The reliability of Czech IPOS was tested with Cronbach alpha (for internal consistency), the intraclass correlation coefficient for total IPOS score and weighted Kappa (for test-retest reliability of individual items). Factor analysis was used for elucidating the construct (Exploratory Factor Analysis). Convergent validity was tested with correlation analysis (Spearman correlation) in a part of the sample, who completed also the Edmonton Symptom Assessment System (ESAS) and the Palliative Performance Scale (PPS). RESULTS: The sample consisted of 140 patients (mean age 72; 90 women; 81% oncological disease). The Cronbach alpha was 0.789; intraclass correlation was 0.88. The correlations of IPOS with ESAS was R = 0.4 and PPS R = - 0.2. Exploratory factor analysis revealed a 2-factor solution on our data. The first factor covers emotional and information needs and the second factor covers physical symptoms. CONCLUSION: Czech IPOS has very good reliability regarding both internal consistency and test-retest reliability. Together with an item analysis results, we can conclude that the Czech adaptation of the tool was successful. The convergent validity needs to be assessed on the larger sample and the proposed 2-factor internal structure of the questionnaire has to be confirmed by using CFA.
- Klíčová slova
- IPOS, Outcome measurement, Palliative care, Patient-reported outcome measure, Psychometrics, Reliability, Symptom assessment, Validity,
- MeSH
- dospělí MeSH
- hodnocení výsledků zdravotní péče normy statistika a číselné údaje MeSH
- kvalita života psychologie MeSH
- lidé středního věku MeSH
- lidé MeSH
- mladiství MeSH
- paliativní péče metody normy statistika a číselné údaje MeSH
- průzkumy a dotazníky MeSH
- psychometrie přístrojové vybavení metody normy MeSH
- reprodukovatelnost výsledků MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- Check Tag
- dospělí MeSH
- lidé středního věku MeSH
- lidé MeSH
- mladiství MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- multicentrická studie MeSH
- Geografické názvy
- Česká republika MeSH
BACKGROUND: Most people prefer to receive end-of-life care in familiar surroundings rather than in hospital. This study examines variation in place of death for people dying from Parkinson's disease (PD) across 11 European and non-European countries. METHODS: Using death certificate data of 2008 for Belgium, France, Italy, Hungary, Czech Republic, New Zealand, USA, Canada, Mexico, South Korea and Spain for all deaths with PD as an underlying cause (ICD-10 code: G20) cross-national differences in place of death were examined. Associations between place of death and patient socio-demographic and regional characteristics were evaluated using multivariable binary logistic regression analyses. RESULTS: The proportion of deaths in hospital ranged from 17% in the USA to 75% in South Korea. Hospital was the most prevalent place of death in France (40%), Hungary (60%) and South Korea; nursing home in New Zealand (71%), Belgium (52%), USA (50%), Canada (48%) and Czech Republic (44%); home in Mexico (73%), Italy (51%) and Spain (46%). The chances of dying in hospital were consistently higher for men (Belgium, France, Italy, USA, Canada), those younger than 80 years (Belgium, France, Italy, USA, Mexico), and those living in areas with a higher provision of hospital beds (Italy, USA). CONCLUSIONS: In several countries a substantial proportion of deaths from PD occurs in hospitals, although this may not be the most optimal place of terminal care and death. The wide variation between countries in the proportion of deaths from PD occurring in hospital indicates a potential for many countries to reduce these proportions.
- MeSH
- charakteristiky bydlení MeSH
- lidé středního věku MeSH
- lidé MeSH
- lůžková kapacita nemocnice MeSH
- nemocnice statistika a číselné údaje MeSH
- Parkinsonova nemoc mortalita MeSH
- péče o umírající statistika a číselné údaje MeSH
- pečovatelské domovy statistika a číselné údaje MeSH
- příčina smrti MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- sexuální faktory MeSH
- smrt * MeSH
- socioekonomické faktory MeSH
- srovnání kultur MeSH
- úmrtní listy MeSH
- věkové faktory MeSH
- Check Tag
- lidé středního věku MeSH
- lidé MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
