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 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.
- Klíčová slova
- Comfort care, Decision-making, Dementia, Family caregiver,
- 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
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: Leadership competencies are essential for the future development of the field of palliative and hospice care. However, a consensus on the core competencies of good leadership is not yet available. Objective: To elicit consensus on core leadership competencies in palliative care. Design: Based on a literature review, a list of 119 specific leadership competencies was compiled. Subsequently, a Delphi technique used three online survey rounds and a final expert consultation (the board of the European Association for Palliative Care [EAPC]) to assess the importance of these competencies. Setting/Participants: International experts in leadership in palliative care were identified from an online search and EAPC networks. Results: From the 194 international multiprofessional experts invited to participate, 99/78/64 took part in the 3 rounds. One hundred fifteen items from eight domains of leadership (research, advocacy and media, communication, teamwork, project management, organizational learning and sustainability, leading change, and personal traits) reached consensus and were deemed as important. Conclusions: The eight domains provide evidence for teaching of leadership competencies in palliative care. We recommend that exploring, identifying, and integrating leadership competencies in palliative care are given more attention in educational curricula and in training interventions.
- Klíčová slova
- Delphi technique, consensus, education, leadership, palliative care,
- MeSH
- delfská metoda MeSH
- komunikace MeSH
- konsensus MeSH
- lidé MeSH
- paliativní péče * MeSH
- vůdcovství * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
- přehledy MeSH
BACKGROUND: The fear of taking away hope hinders clinicians' willingness to share serious news with patients with advanced disease. Unrealistic illness expectations, on the other hand, can complicate decision making and end-of-life care outcomes. Exploration of the association between hope and illness expectations can support clinicians in better communication with their patients. AIM: The aim of this study was to explore whether realistic illness expectations are associated with reduced hope in people with advanced cancer. DESIGN: This is a cross-sectional secondary analysis of baseline data from a primary palliative care cluster-randomized trial CONNECT (data collected from July 2016 to October 2020). Hope was measured by Herth Hope Index. Illness expectations were measured by assessing patients' understanding of their treatment goals, life expectancy, and terminal illness acknowledgement. Multivariable regression was performed, adjusting for demographical and clinical confounders. SETTING/PARTICIPANTS: Adult patients with advanced solid cancers recruited across 17 oncology clinics. RESULTS: Data from 672 patients were included in the study, with mean age of 69.3 years (±10.2), 53.6% were female. Proportion of patients indicating realistic expectations varied based on which question was asked from 10% to 46%. Median level of hope was 39 (IQR = 36-43). Multivariate non-inferiority regression did not find any significant differences in hope between patients with more and less realistic illness expectations. CONCLUSIONS: Our results suggest that hope can be sustained while holding both realistic and unrealistic illness expectations. Communication about serious news should focus on clarifying the expectations as well as supporting people's hopes.
- Klíčová slova
- Psycho-oncology, awareness, cancer, communication, critical illness, hope, palliative care, terminally ill,
- MeSH
- dospělí MeSH
- lidé středního věku MeSH
- lidé MeSH
- motivace MeSH
- naděje MeSH
- nádory * terapie MeSH
- paliativní péče metody MeSH
- péče o umírající * MeSH
- průřezové studie MeSH
- randomizované kontrolované studie jako téma 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.
- 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
A significant percentage of nursing home residents die in hospitals. The objective of this study is to explore the factors that influence decision-making about hospitalizations of nursing home residents in the Czech Republic that become terminal. A total of 27 semi-structured interviews with nurses and social workers registered with nursing homes, as well as general practitioners cooperating with nursing homes, were conducted. Data were analyzed using thematic analysis. Six themes of the factors influencing decision-making about hospitalizations were made: the options of the nursing home, the accessibility of medical decision-making, inadequate care planning, the age of the resident, fear of legal action, and making the decision to hospitalize. Terminality of life seems to have no impact on the decision of nurses about hospitalization. Terminal hospitalization seems to be the result of the limited options that nurses have in different nursing homes in terms of how to organize end-of-life care.
- Klíčová slova
- Czech Republic, Terminal hospitalizations, advance care planning, end-of-life, nursing homes, older adults,
- MeSH
- hospitalizace MeSH
- lidé MeSH
- pečovatelské domovy MeSH
- praktičtí lékaři * MeSH
- rozhodování MeSH
- sociální pracovníci MeSH
- zdravotní sestry * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
BACKGROUND: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. OBJECTIVES: to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. DESIGN: a pretest-posttest design. SETTING: in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. PARTICIPANTS: in total, 88 family caregivers completed baseline, intervention and follow-up assessments. METHODS: family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. RESULTS: family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. CONCLUSIONS: the mySupport intervention may be impactful in countries beyond the original setting.
- Klíčová slova
- decision-making, dementia, family caregivers, nursing homes, older people,
- MeSH
- demence * diagnóza terapie MeSH
- lidé MeSH
- osoby pečující o pacienty MeSH
- pečovatelské domovy MeSH
- předběžné plánování péče * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
- Geografické názvy
- Kanada MeSH
BACKGROUND: Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the Family Carer Decisional Support intervention is to inform family carers on end-of-life care options for a person living with advanced dementia and enable them to contribute to advance care planning. This implementation study proposes to; 1) adopt and apply the intervention internationally; and, 2) train nursing home staff to deliver the family carer decision support intervention. METHODS: This study will employ a multiple case study design to allow an understanding of the implementation process and to identify the factors which determine how well the intervention will work as intended. We will enrol nursing homes from each country (Canada n = 2 Republic of Ireland = 2, three regions in the UK n = 2 each, The Netherlands n = 2, Italy n = 2 and the Czech Republic n = 2) to reflect the range of characteristics in each national and local context. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. Our mixed methods study design has three phases to (1) establish knowledge about the context of implementation, (2) participant baseline information and measures and (3) follow up evaluation. DISCUSSION: The use of a multiple case study design will enable evaluation of the intervention in different national, regional, cultural, clinical, social and organisational contexts, and we anticipate collecting rich and in-depth data. While it is hoped that the intervention resources will impact on policy and practice in the nursing homes that are recruited to the study, the development of implementation guidelines will ensure impact on wider national policy and practice. It is our aim that the resources will be sustainable beyond the duration of the study and this will enable the resources to have a longstanding relevance for future advance care planning practice for staff, family carers and residents with advanced dementia.
- Klíčová slova
- Advance care planning, Dementia, Implementation, Nursing homes, Palliative care, Training,
- MeSH
- demence * terapie MeSH
- lidé MeSH
- osoby pečující o pacienty MeSH
- péče o umírající * metody MeSH
- pečovatelské domovy MeSH
- předběžné plánování péče * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem 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
