AIM: This systematic review aims to identify methodological and ethical challenges in designing and conducting research at the end of life from the perspective of researchers and provide a set of recommendations. BACKGROUND: Conducting research with patients and family carers facing end-of-life issues is ethically and methodologically complex. DESIGN: A systematic review was conducted. DATA SOURCES: Four databases (MEDLINE, EMBASE, CINAHL, PsycInfo) were searched from inception until the end of 2021 in February 2022. REVIEW METHODS: The Preferred Reporting Items for Systematic Reviews was followed, and the JBI Approach to qualitative synthesis was used for analysis. RESULTS: Seventeen of 1983 studies met inclusion criteria. Data were distilled to six main themes. These included (1) the need for flexibility at all stages of the research process; (2) careful attention to timing; (3) sensitivity in approach; (4) the importance of stakeholder collaboration; (5) the need for unique researcher skills; and (6) the need to deal with the issue of missing data. CONCLUSION: The findings illuminate several considerations that can inform training programmes, ethical review processes and research designs when embarking on research in this field.

• MeSH
• kvalitativní výzkum * MeSH
• lidé MeSH
• péče o umírající * etika   MeSH
• výzkumný projekt * MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• systematický přehled 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.

• 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: 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

BACKGROUND AND OBJECTIVES: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention. RESEARCH DESIGN AND METHODS: A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom. RESULTS: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. DISCUSSION AND IMPLICATIONS: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.

• MeSH
• demence * MeSH
• lidé MeSH
• osoby pečující o pacienty * psychologie   MeSH
• péče o umírající MeSH
• pečovatelské domovy * organizace a řízení   MeSH
• předběžné plánování péče * MeSH
• rozhodování MeSH
• senioři MeSH
• Check Tag
• lidé MeSH
• mužské pohlaví MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH
• Geografické názvy
• Česká republika MeSH
• Irsko MeSH
• Itálie MeSH
• Kanada MeSH
• Nizozemsko MeSH
• Spojené království MeSH

Olfactory and cognitive performance share neural correlates profoundly affected by physiological aging. However, whether odor identification and discrimination scores predict global cognitive status and executive function in healthy older people with intact cognition is unclear. Therefore, in the present study, we set out to elucidate these links in a convenience sample of 204 independently living, cognitively intact healthy Czech adults aged 77.4 ± 8.7 (61-97 years) over two waves of data collection (one-year interval). We used the Czech versions of the Montreal Cognitive Assessment (MoCA) to evaluate global cognition, and the Prague Stroop Test (PST), Trail Making Test (TMT), and several verbal fluency (VF) tests to assess executive function. As a subsidiary aim, we aimed to examine the contribution of olfactory performance towards achieving a MoCA score above vs. below the published cut-off value. We found that the MoCA scores exhibited moderate associations with both odor identification and discrimination. Furthermore, odor identification significantly predicted PST C and C/D scores. Odor discrimination significantly predicted PST C/D, TMT B/A, and standardized composite VF scores. Our findings demonstrate that olfaction, on the one hand, and global cognition and executive function, on the other, are related even in healthy older people.

• MeSH
• čich fyziologie   MeSH
• čichová percepce fyziologie   MeSH
• diskriminace (psychologie) * fyziologie   MeSH
• exekutivní funkce * fyziologie   MeSH
• kognice * fyziologie   MeSH
• kognitivní dysfunkce patofyziologie   diagnóza   MeSH
• lidé středního věku MeSH
• lidé MeSH
• neuropsychologické testy MeSH
• odoranty * MeSH
• senioři nad 80 let MeSH
• senioři MeSH
• stárnutí * fyziologie   MeSH
• testy pro posouzení mentálních funkcí a demence 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

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

Up to 26% of individuals residing in care homes are impacted by cancer. This underscores the importance of understanding the holistic needs of care home residents living with cancer to enhance the quality of their care. The primary objective of this integrative literature review was to consolidate the available evidence concerning the comprehensive needs of people living with cancer in care home settings, providing valuable insights into addressing their diverse needs. An integrative literature review was conducted using a systematic approach. Extensive searches were conducted in three databases, complemented by a thorough examination of grey literature and reference lists of relevant papers. The review focused on literature published between 2012 and 2022. The screening process involved two independent reviewers, with a third reviewer resolving any discrepancies. The review identified twenty research papers that met the eligibility criteria. These papers shed light on three primary themes related to the holistic needs of care home residents with cancer: physical, psychological, and end-of-life needs. Physical needs encompassed pain management, symptom control, and nutrition, while psychological needs involved social support, emotional well-being, and mental health care. End-of-life needs addressed end-of-life care and advance care planning. These themes highlight the multifaceted nature of cancer care in care homes and underscore the importance of addressing residents' holistic needs in a comprehensive and integrated manner. Improving care home education about cancer and integrating palliative and hospice services within this setting are vital for addressing the diverse needs of residents with cancer.

• Publikační typ
• časopisecké články MeSH
• přehledy MeSH

OBJECTIVE: Russia's invasion of Ukraine in February 2022 triggered a huge wave of migration, with thousands of refugees arriving at Prague's Central Station. With no medical service available, medical students started to volunteer and were running an infirmary available around the clock. The research aimed to explore medical students' professional experiences, emotionally challenging situations, and coping strategies in this demanding setting. METHODS: The authors used a qualitative analysis of semi-structured in-depth interviews with 19 participants recruited through purposive sampling. Interviews took place between April and May 2022. Data were recorded, transcribed, and processed by using thematic qualitative analysis. RESULTS: The research identified five emotionally challenging situations: caring for traumatized refugees, refusal of treatment, disruption of everyday life, independent decision-making, and complexity of voluntary work. Students adopted both adaptive and maladaptive coping strategies for dealing with stress and trauma. Almost half the students reported signs of secondary traumatization and moral distress; however, no one asked for psychological help. CONCLUSIONS: Medical school curricula should cover trauma-informed approaches, healthy coping strategies, and destigmatization of psychological problems.

• MeSH
• dobrovolní pracovníci psychologie   MeSH
• kurikulum MeSH
• kvalitativní výzkum MeSH
• lidé MeSH
• studenti lékařství * psychologie   MeSH
• uprchlíci * psychologie   MeSH
• zdravotní stav MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH

Úvod: Pro dobrou implementaci paliativní péče do nemocničního prostředí je nezbytné edukovat zdravotnický personál o možnostech a přínosu týmu paliativní péče, zvýšit povědomí o této službě napříč celý nemocničním systémem a znát také potřeby primárních týmů. Cílem tohoto příspěvku je prezentovat proces a výsledky implementace paliativní péče do prostředí Fakultní Thomayerovy nemocnice. Metodika: V říjnu roku 2022 byla zahájena činnost Oddělení paliativní péče ve Fakultní Thomayerově nemocnici pro dětské i dospělé pacienty. Po půl roce fungování ve FTN byl rozeslán online dotazník, jehož cílem bylo zhodnotit implementaci paliativní péče do prostředí fakultní nemocnice. Výsledky: Dotazník od dubna do května 2023 vyplnilo 223 respondentů. V tomto souboru bylo 71 % respondentů, kteří již v minulosti někdy s OPP spolupracovali, svou zkušenost hodnotili v 85 % případů převážně pozitivně, ocenili zlepšení péče, pomoc se s managementem symptomů a podporu rodin a zlepšení komunikace s nimi. Téměř třetina respondentů s týmem nikdy nespolupracovala, 26 % nemá potřebu, 3 % o OPP nikdy neslyšela. Respondenti, kteří s OPP nikdy nespolupracovali, se shodují, že paliativní péče patří do medicíny a je třeba podporovat její rozvoj. Polovina z nich má také obavy, že pacienty při zmínce o paliativní péči ztratí naději. Závěr: Proces implementace se zdá být úspěšný, většina respondentů o týmu slyšela a ví, co paliativní péče znamená. Proces implementace byl podpořen řadou dílčích kroků - povinný vzdělávací seminář, schůzky s vedoucími jednotlivých klinik, pravidelné semináře otevřené všem zaměstnancům a kontaktem s primárními týmy při každé intervenci.

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 one 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
• IPOS-r,
• MeSH
• chronické selhání ledvin psychologie   MeSH
• kvalita života psychologie   MeSH
• lidé MeSH
• nemoci ledvin * psychologie   MeSH
• průzkumy a dotazníky * MeSH
• reprodukovatelnost výsledků MeSH
• validační studie jako téma MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• přehledy MeSH
• Geografické názvy
• Česká republika MeSH