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.

• 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

In this study, we employed a pre-interview survey and conducted interviews with nursing home staff members and residents/family members to understand their perceptions of whether the COVID-19 restrictions fulfilled obligations to nursing home residents under various principles, including autonomy, beneficence, nonmaleficence, justice, and privacy. We conducted 20 semi-structured interviews with staff members from 14 facilities, and 20 with residents and/or family members from 13 facilities. We used a qualitative descriptive study design and thematic analysis methodology to analyze the interviews. Findings from the pre-interview survey indicated that, compared to nursing home staff, residents and their families perceived lower adherence to bioethics principles during the pandemic. Qualitative analysis themes included specific restrictions, challenges, facility notifications, consequences, communication, and relationships between staff and residents/family members. Our study exposes the struggle to balance infection control with respecting bioethical principles in nursing homes, suggesting avenues for improving processes and policies during public health emergencies.

• MeSH
• bioetická témata MeSH
• COVID-19 * prevence a kontrola   epidemiologie   psychologie   MeSH
• domovy pro seniory etika   MeSH
• dospělí MeSH
• kontrola infekce MeSH
• kvalitativní výzkum * MeSH
• lidé středního věku MeSH
• lidé MeSH
• pečovatelské domovy * etika   MeSH
• postoj zdravotnického personálu MeSH
• rodina * psychologie   MeSH
• rozhovory jako téma MeSH
• SARS-CoV-2 MeSH
• senioři 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.

• 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: The COVID-19 pandemic had a major impact on the mental health and well-being of children with neurodevelopmental conditions (NDCs) and of their families worldwide. However, there is insufficient evidence to understand how different factors (e.g., individual, family, country, children) have impacted on anxiety levels of families and their children with NDCs developed over time. METHODS: We used data from a global survey assessing the experience of 8043 families and their children with NDCs (mean of age (m) = 13.18 years, 37% female) and their typically developing siblings (m = 12.9 years, 45% female) in combination with data from the European Centre for Disease Prevention and Control, the University of Oxford, and the Central Intelligence Agency (CIA) World Factbook, to create a multilevel data set. Using stepwise multilevel modelling, we generated child-, family- and country-related factors that may have contributed to the anxiety levels of children with NDCs, their siblings if they had any, and their parents. All data were reported by parents. RESULTS: Our results suggest that parental anxiety was best explained by family-related factors such as concerns about COVID-19 and illness. Children's anxiety was best explained by child-related factors such as children's concerns about loss of routine, family conflict, and safety in general, as well as concerns about COVID-19. In addition, anxiety levels were linked to the presence of pre-existing anxiety conditions for both children with NDCs and their parents. CONCLUSIONS: The present study shows that across the globe there was a raise in anxiety levels for both parents and their children with NDCs because of COVID-19 and that country-level factors had little or no impact on explaining differences in this increase, once family and child factors were considered. Our findings also highlight that certain groups of children with NDCs were at higher risk for anxiety than others and had specific concerns. Together, these results show that anxiety of families and their children with NDCs during the COVID-19 pandemic were predicted by very specific concerns and worries which inform the development of future toolkits and policy. Future studies should investigate how country factors can play a protective role during future crises.

• MeSH
• COVID-19 * MeSH
• lidé MeSH
• mladiství MeSH
• pandemie * MeSH
• rodiče psychologie   MeSH
• rodina psychologie   MeSH
• úzkost epidemiologie   MeSH
• Check Tag
• lidé MeSH
• mladiství MeSH
• mužské pohlaví MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH

Kontext. Od zveřejnění projektu IMPaCCT v roce 2007 bylo věnováno velké úsilí vývoji nových přístupů v oblasti dětské paliativní péče (DPP). Nyní, o patnáct let později, je na čase standardy dětské paliativní péče redefinovat.Cíle. Mezinárodní skupina odborníků v dětské paliativní péči provedla prostřednictvím projektu GO-PPaCS (Global Overview – Paediatric Palliative Care Standards) revizi standardů DPP. Cílem byla aktualizace standardů DPP s ohledem na specificitu různých kontextů péče, zdrojů a vznikajících výzev. Tento dokument si klade za cíl oslovit všechny, kdo jsou do dětské paliativní péče přímo či nepřímo zapojeni. Metody. V databázi MEDLINE byl vyhledán přehled literatury s cílem podrobněji rozvést základní body a současné standardy DPP a vyjádřit se k mezinárodnímu kontextu. Pro vyhledávání literatury (s aktualizací dne 15. dubna 2021) byly použity různé kombinace klíčových termínů, vyhledávání se zaměřilo na práce publikované v angličtině během uplynulých 5 let (2016−2020), přičemž starší články byly vzaty v potaz, pokud byly relevantní. Konsensu v základních bodech, standardech léčby a obsahu publikace bylo dosaženo otevřenou diskusí. Výsledky. Byly definovány základní body týkající se definice DPP, kritérií způsobilosti pro DPP a míry potřeby DPP. Standardy byly opětovně definovány pro následujících šest oblastí: 1) klinické, vývojové, psychologické, sociální, etické a spirituální potřeby; 2) péče v závěru života; 3) modely péče a prostředí, kde je poskytována; 4) DPP při humanitárních krizích; 5) nástroje péče; 6) vzdělávání a výcvik zdravotnických pracovníků poskytujících péči. Závěr. Tento dokument, zpracovaný s přispěním mezinárodní skupiny odborníků z různých zemí, s různými zkušenostmi a z různých modelů péče, přináší základní body a standardy pro širší implementaci DPP.

• MeSH
• dítě MeSH
• lidé MeSH
• paliativní péče * normy   organizace a řízení   psychologie   MeSH
• péče o umírající normy   organizace a řízení   psychologie   MeSH
• rodina psychologie   MeSH
• Check Tag
• dítě MeSH
• lidé MeSH
• Publikační typ
• směrnice pro lékařskou praxi MeSH

• MeSH
• dítě MeSH
• lidé MeSH
• Münchhausenův syndrom diagnóza   prevence a kontrola   psychologie   MeSH
• ochrana práv dítěte klasifikace   zákonodárství a právo   MeSH
• rodina psychologie   MeSH
• směrnice pro lékařskou praxi jako téma MeSH
• vystavení násilí klasifikace   prevence a kontrola   MeSH
• zneužívané dítě * diagnóza   prevence a kontrola   psychologie   zákonodárství a právo   MeSH
• Check Tag
• dítě MeSH
• lidé MeSH
• Publikační typ
• přehledy MeSH

Východiská: Hlavným cieľom štúdie bolo zmapovať vplyv prostredia dieťaťa na hospitalizáciu a výskyt akútnych komplikácií. Respondentskú vzorku tvorilo 64 detí vo veku od 6 – 12 rokov dispenzarizovaných v diabetologickej ambulancii Detského diabetologického centra. Súbor a metódy: Na získanie údajov sme použili dotazník subjektívnej povahy a na verifikáciu hypotéz štatistické metódy – chí kvadrát test (overenie súvis- losti nominálnych údajov a overenie rozdielnosti po- rovnávaných skupín), Studentov t-test (porovnanie stredných hodnôt) a F-test (porovnanie rozptylu). Výsledky: V posudzovaných vzorkách detí z úplného a neúplného prostredia sa nepotvrdili korelačné vzťahy. Korelačný koeficient medzi deťmi z úplnej a neúplnej rodiny je 0,028 a p-hodnota je 0,82. Ďalej sme zistili, že rozdiely vo výskyte akútnych kompli- kácií medzi sledovanými skupinami boli veľmi malé. Dieťa má najväčšiu podporu zo strany svojej rodiny (priemerné hodnotenie 3,86) a zo strany priateľov či učiteľov (priemerné hodnotenie 2,66, resp. 2,22). Občianske združenie poskytuje podporu len vo veľmi malej miere (priemerné hodnotenie bolo 0,64). Záver: Aj napriek tomu, že v našich výsledkoch prieskumu sa nepotvrdila súvislosť medzi vplyvom rodinného prostredia dieťaťa a výskytom akútnych komplikácií, či častejšími hospitalizáciami, rezonuje potreba podporovať rodinné a sociálne prostredie ako jednu z dôležitých požiadaviek pre efektívnejšie zvládanie starostlivosti o detského diabetika

Backgrounds: The main aim of the study was to map the influence of the child‘s environment on hos- pitalization and related occurrence of acute compli- cations. The respondent sample consisted of 64 chil- dren aged 6-12 years dispensed in the diabetological outpatient clinic of the Children‘s Diabetology Center. File and methods: To obtain the data, we used a questionnaire of a subjective nature and to verify the hypotheses of the statistical method - chi squa- re test (verifying the relationship between nominal data and verifying the differences of the compared groups), Student ́s t - test (comparison of mean va- lues) and F - test (comparison of variance). Results: Correlational relationships were not confir- med in the assessed samples of children from com- plete and incomplete environments. The correlation coefficient between children from complete and in- complete families is 0.028 and the p-value is 0.82. Moreover, we found that the differences in the inci- dence of acute complications between the observed groups were very small. The child has the greatest support from his family (average rating of 3.86) and from friends or teachers (average rating of 2.66 and 2.22, respectively). The civil association provides sup- port only to a very small extent (the average rating was 0.64). Conclusion: Although the research results did not confirm the link between the influence of the child‘s family environment and the occurrence of acute complications or more frequent hospitalizations, the need to support the family and social environment resonates as one of the important requirements for more effective care of children with diabetes

• Klíčová slova
• podpora rodiny, rodinné prostředí,
• MeSH
• diabetes mellitus 1. typu MeSH
• dítě MeSH
• průzkumy a dotazníky MeSH
• rodina psychologie   MeSH
• Check Tag
• dítě MeSH

• MeSH
• dítě MeSH
• interpersonální vztahy MeSH
• klinická etika MeSH
• komunikace MeSH
• lidé MeSH
• péče o dítě * etika   organizace a řízení   MeSH
• rodina psychologie   MeSH
• sourozenci psychologie   MeSH
• vážná nemoc * psychologie   MeSH
• Check Tag
• dítě MeSH
• lidé MeSH
• Publikační typ
• přehledy MeSH

• MeSH
• dítě MeSH
• interpersonální vztahy MeSH
• komunikace MeSH
• lidé MeSH
• péče o umírající * etika   psychologie   MeSH
• poradenství MeSH
• rodina psychologie   MeSH
• smrt MeSH
• vztahy mezi odborníkem a rodinou MeSH
• zármutek MeSH
• Check Tag
• dítě MeSH
• lidé MeSH
• mužské pohlaví MeSH
• ženské pohlaví MeSH
• Publikační typ
• kazuistiky MeSH

BACKGROUND: Stigma among healthcare providers is a barrier to the effective delivery of mental health services in primary care. Few studies have been conducted in primary care settings comparing the attitudes of healthcare providers and experiences of people with mental illness who are service users in those facilities. Such research is necessary across diverse global settings to characterize stigma and inform effective stigma reduction. METHODS: Qualitative research was conducted on mental illness stigma in primary care settings in one low-income country (Nepal), two lower-middle income countries (India, Tunisia), one upper-middle-income country (Lebanon), and three high-income countries (Czech Republic, Hungary, Italy). Qualitative interviews were conducted with 248 participants: 64 primary care providers, 11 primary care facility managers, 111 people with mental illness, and 60 family members of people with mental illness. Data were analyzed using framework analysis. RESULTS: Primary care providers endorsed some willingness to help persons with mental illness but reported not having appropriate training and supervision to deliver mental healthcare. They expressed that people with mental illness are aggressive and unpredictable. Some reported that mental illness is incurable, and mental healthcare is burdensome and leads to burnout. They preferred mental healthcare to be delivered by specialists. Service users did not report high levels of discrimination from primary care providers; however, they had limited expectations of support from primary care providers. Service users reported internalized stigma and discrimination from family and community members. Providers and service users reported unreliable psychiatric medication supply and lack of facilities for confidential consultations. Limitations of the study include conducting qualitative interviews in clinical settings and reliance on clinician-researchers in some sites to conduct interviews, which potentially biases respondents to present attitudes and experiences about primary care services in a positive manner. CONCLUSIONS: Primary care providers' willingness to interact with people with mental illness and receive more training presents an opportunity to address stigmatizing beliefs and stereotypes. This study also raises important methodological questions about the most appropriate strategies to accurately understand attitudes and experiences of people with mental illness. Recommendations are provided for future qualitative research about stigma, such as qualitative interviewing by non-clinical personnel, involving non-clinical staff for recruitment of participants, conducting interviews in non-clinical settings, and partnering with people with mental illness to facilitate qualitative data collection and analysis.

• MeSH
• dospělí MeSH
• duševní poruchy psychologie   MeSH
• kvalitativní výzkum MeSH
• lidé MeSH
• primární zdravotní péče MeSH
• rodina psychologie   MeSH
• rozhovory jako téma MeSH
• služby péče o duševní zdraví MeSH
• společenské stigma * MeSH
• zdravotnický personál psychologie   MeSH
• Check Tag
• dospělí MeSH
• lidé MeSH
• mužské pohlaví MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• multicentrická studie MeSH
• práce podpořená grantem MeSH
• Research Support, N.I.H., Extramural MeSH
• srovnávací studie MeSH
• Geografické názvy
• Česká republika MeSH
• Indie MeSH
• Itálie MeSH
• Libanon MeSH
• Maďarsko MeSH
• Tunisko MeSH