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According to the number of falls, fallers can be single (only one fall) or recurrent (two or more falls), with different risk profiles for loss of independence and frailty. The presence of risk factors in community-dwelling single- and recurrent fallers using a wearable fall-detection device, such as the Personal Emergency Response System (PERS), as part of a telemergency service, is still unknown. This article evaluates how using a PERS, within a telemergency service, helps identify risk profiles and assessment of any differences between non-fallers and fallers in community-dwelling older adults. A sub-group analysis was performed, dividing users into non-fallers (n = 226) and fallers (≥1 fall; n = 89); single-fallers (n = 66) and recurrent fallers (n = 23). Median age was higher in fallers (87.7 years vs. 86), whereas recurrent fallers were less independent, had fewer comorbidities, and had more low-extremity disabilities. The use of the PERS for medical problems (Adjusted OR = 0.31), excluding falls, support calls (Adjusted OR = 0.26), and service demands (Adjusted OR = 0.30), was significantly associated with a fall risk reduction. The findings suggest that the integration within a telemergency service may impact on fall-risk factors.
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Serious illness conversations aim to align the care process with the goals and preferences of adult patients suffering from any advanced disease. They represent a challenge for healthcare professionals and require specific skills. Conversation guides consistent with task-centered instructional strategies may be particularly helpful to improve the quality of communication. This study aims to develop, validate, and preliminarily evaluate an educational booklet to support Italian social and healthcare professionals in serious illness conversations. A three-step approach, including development, validation, and evaluation, was followed. A co-creation process with meaningful stakeholders led to the development of the booklet, validated by 15 experts on clarity, completeness, coherence, and relevance. It underwent testing on readability (Gulpease index, 0 = lowest-100 = maximum) and design (Baker Able Leaflet Design criteria, 0 = worst to 32 = best). Twenty-two professionals with different scope of practice and care settings evaluated acceptability (acceptable if score ≥30), usefulness, feasibility to use (1 = not at all to 10 = extremely), and perceived acquired knowledge (1 = not at all to 5 = extremely). After four rounds of adjustments, the booklet scored 97% for relevance, 60 for readability, and 25/32 for design. In all, 18 (81.8%), 19 (86.4%) and 17 (77.3%) professionals deemed the booklet acceptable, moderate to highly useful, and feasible to use, respectively; 18/22 perceived gain in knowledge and all would recommend it to colleagues. The booklet has good readability, excellent design, high content validity, and a high degree of perceived usefulness and acquired knowledge. The booklet is tailored to users' priorities, mirrors their most frequent daily practice challenges, and offers 1-minute, 2-minute and 5-minute solutions for each scenario. The co-creation process ensured the development of an educational resource that could be useful regardless of the scope of practice and the care setting to support professionals in serious illness conversations.
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Pessoal de Saúde , Folhetos , Humanos , Pessoal de Saúde/educação , Comunicação , Feminino , Adulto , Masculino , Pessoa de Meia-IdadeRESUMO
Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.
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Planejamento Antecipado de Cuidados , Consenso , Técnica Delphi , Demência , Cuidados Paliativos , Humanos , Planejamento Antecipado de Cuidados/organização & administração , Diretivas Antecipadas , Demência/terapia , Europa (Continente) , Política de SaúdeRESUMO
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.
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Planejamento Antecipado de Cuidados , Cuidadores , Demência , Casas de Saúde , Humanos , Casas de Saúde/organização & administração , Cuidadores/psicologia , Assistência Terminal , República Tcheca , Canadá , Países Baixos , Itália , Reino Unido , Masculino , Idoso , Tomada de Decisões , Feminino , IrlandaRESUMO
Social and healthcare professionals often feel ill equipped to effectively engage in difficult conversations with patients, and poor proficiency negatively affects the quality of patient care. Printed educational resources (PERs) that provide guidance on sustaining complex clinical communication may be a source of support if thoughtfully designed. This study aimed to describe the key features of PERs in order to improve the quality of clinical communication according to the perspective of meaningful stakeholders. This was a descriptive secondary analysis of data collected by three remote focus group discussions that involved 15 stakeholders in the context of developing an educational booklet to support professionals in complex communication scenarios. Focus groups were audio-recorded and transcribed verbatim, and an inductive thematic analysis was performed. Three key features of PERs that aim toward quality improvement in clinical communication were identified: (1) having the potential to provide benefits in clinical practice; (2) facilitating, encouraging, and enticing reading; and (3) meeting the need of professionals to improve or update their knowledge. These findings suggest that PERs relevant to professionals' clinical priorities and learning needs may make their efforts to apply learning in practice more likely and consequently result in improved healthcare quality.
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INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.
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Planejamento Antecipado de Cuidados , Demência , Assistência Terminal , Humanos , Consenso , Técnica Delphi , Demência/terapiaRESUMO
. Patient and public involvement in research. Patient and public involvement (PPI) entails research being carried out 'with' members of the public, rather than 'to', 'about' or 'for' them. The word public can refer to patients, potential patients, carers and people who use health and social care services, people from organisations that represent people who use services as well as members of the public. People with lived experience of a particular service or health condition may add value to the research and even influence the research question. The involvement may occurr in any stage of the research process, but preferably since the very start, when the study is designed. To obtain a real involvement and participation some practical tips are suggested. In this paper advantages but also difficulties related to PPI are presented, based both on the literature but also from the authors' experience.
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Cuidadores , Participação do Paciente , Humanos , Apoio SocialRESUMO
BACKGROUND: The European Union has used Healthy Life Years (HLY) as an indicator to monitor the health of its aging populations. Scholarly and popular interest in HLY across countries has grown, particularly regarding the ranking of countries. It is important to note that HLY is based on self-assessments of activity limitations, raising the possibility that it might be influenced by differences in health reporting behaviours between populations, a phenomenon known as differential item functioning (DIF). METHODS: We estimated DIF-adjusted HLY at age 50 for Belgium, France, Germany, Greece, Italy, the Netherlands, Spain, and Sweden to determine the extent to which differences in HLY might be influenced by reporting heterogeneity across countries. We used anchoring vignettes, taken from the 2004 Survey of Health, Ageing and Retirement in Europe, to estimate DIF-adjusted prevalence rates of activity limitations measured by the Global Activity Limitations Indicator (GALI). The Sullivan method was used to calculate DIF-adjusted HLY. RESULTS: Changes in HLY before and after adjustment ranged from a 1.20-year decrease for men in Italy to a 1.61-year increase for women in Spain. Adjustment for DIF produced changes in the rankings of the countries by HLY, with upward and downward movements of up to three positions. CONCLUSION: Our results show that DIF is likely to affect HLY estimates, thereby posing a challenge to the validity of comparisons of HLY across European countries. The findings suggest that HLY should be used to monitor population health status within a country, rather than to make comparisons across countries.
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Nível de Saúde , Masculino , Humanos , Feminino , Pessoa de Meia-Idade , Europa (Continente)/epidemiologia , União Europeia , Suécia , Inquéritos e QuestionáriosRESUMO
CONTEXT: Although several interventions aimed to promote end-of-life conversations are available, it is unclear whether and how these affect delivery of end-of-life conversations. Measuring the processes associated with high-quality end-of-life care may trigger improvement. OBJECTIVES: To estimate the effect of interventions aimed to promote end-of-life conversations in clinical encounters with patients with advanced chronic or terminal illness or their family, on process indicators of end-of-life conversations. METHODS: Systematic review with meta-analysis (PROSPERO no. CRD42021289471). Four databases (PubMed, CINAHL, PsycINFO, and Scopus) were searched up to September 30, 2021. The primary outcomes were any process indicators of end-of-life conversations. Results of pairwise meta-analyses were presented as Risk Ratio (RR) for occurrence, standardized mean difference (SMD) for quality and ratio of means (ROM) for duration. Meta-analysis was not performed when fewer than four studies were available. RESULTS: A total of 4,663 articles were scanned. Eighteen studies were included in the systematic review and 16 entered at least one meta-analysis: documented occurrence (n = 8), patient-reported occurrence (n = 4), patient-reported-quality (n = 4), duration (n = 4). There was significant variability in settings, patients' clinical conditions, and professionals. No significant effect of interventions on documented occurrence (RR 1.54, 95% CI 0.84-2.84; I2 91%), patient-reported occurrence (RR 1.52, 95% CI 0.80-2.91; I2 95%), patient-reported quality (SMD 0.83, 95% CI -1.06 to 2.71; I2 99%), or duration (ROM 1.20, 95% CI 0.95-1.51; I2 65%) of end-of-life conversations was found. Data on frequency were conflicting. Interventions targeting multiple stakeholders promoted earlier and more comprehensive conversations. CONCLUSION: Heterogeneity was considerable, but findings suggest no significant effect of interventions on occurrence, patient-reported quality and duration of end-of-life conversations. Nevertheless, we found indications for interventions targeting multiple stakeholders to promote earlier and more comprehensive conversations.
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Assistência Terminal , Humanos , Comunicação , MorteRESUMO
This meta-analysis of RCTs aimed to determine whether replacing face-to-face hospital care with telemedicine deteriorates psychosocial outcomes of adult cancer patients, in terms of quality of life (QoL), anxiety, distress, and depression. RCTs on interventions aimed at improving patient psychosocial outcomes were excluded. MEDLINE, EmBASE, and PsycInfo were searched on 13 May 2022 without language or date restrictions. In total, 1400 records were identified and 8 RCTs included (4434 subjects). Study methodological quality was moderate. Statistically significant improvements were observed in favor of the intervention for QoL (SMD = 0.22, 95% CI 0.01 to 0.43, p = 0.04), anxiety (SMD = -0.17, 95% CI -0.30 to -0.04, p < 0.01), and global distress (SMD = -0.38, 95% CI -0.51 to -0.25, p < 0.01). A meta-analysis on depression could not be performed. In subgroup analyses, the intervention appeared to be more beneficial for patients receiving active treatment vs. follow-up, for "other cancer types" vs. breast cancer, and for "other modes of administration" vs. telephone. Given the many potential advantages of being assisted at home, telemedicine appears to be a viable option in oncology. However, more research is necessary to determine the types of patients who may benefit the most from these alternative care modalities.
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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.
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Planejamento Antecipado de Cuidados , Demência , Humanos , Cuidadores , Canadá , Casas de Saúde , Demência/diagnóstico , Demência/terapiaRESUMO
OBJECTIVES: Family caregivers' (FCs) caregiving in nursing home (NH) moves across 3 main phases: transitioning relatives to long-term care, worsening of a relative's conditions, and end of life; each phase brings specific challenges that FCs must confront. Moreover, during the COVID-19 pandemic, strict mandatory visitor restrictions affected communication modalities. This study explored FCs' experience of communication with NH staff during the COVID-19 pandemic from admission to end of life. METHODS: A descriptive qualitative study with inductive content analysis was performed in 7 Italian NHs from May to June 2021. NH managers purposively identified 25 FCs at different phases of their caregiving trajectory: transitional (i.e., admission in the previous 8 weeks, n = 8), deterioration-in-condition (i.e., acknowledged changes in care needs of their relative after trigger events, n = 10), and end-of-life phase (i.e., death expected in the next weeks or a few months, n = 7), who were interviewed. RESULTS: Regardless the phase of caregiving trajectory, what mattered most to FCs was the opportunity to have regular and sensitive discussions with health-care professionals. The need of in-person communication increased nearing death. The COVID-19 pandemic enhanced FCs' need to interact with health-care professionals they trusted. Knowledge of residents' preferences mitigated FCs' turbulent emotions throughout the overall caregiving trajectory. SIGNIFICANCE OF RESULTS: Findings suggest that in-person contacts should be prioritized and facilitated when possible, particularly at the end of life; nonetheless, meaningful communication can occur also through remote modalities. Investments in training health-care professionals about effective long-distance communication and supportive skills can help trusting relationships to be established. Open discussions about residents' care preferences should be encouraged.
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AIMS: To explore and understand lived experiences of end-of-life communication among nursing home staff. DESIGN: Interpretive phenomenological study. METHODS: In-person, semi-structured, in-depth interviews were conducted from May to August 2021 with 21 nursing home staff members involved in end-of-life communication (four managers, four chief nurses, three chief medical officers, three nurses, three psychologists, two occupational therapists, one chief nurse aide and one nurse aide). Data were analysed by van Manen's hermeneutic approach, which uses the lifeworld existentials of spatiality, corporeality, temporality and relationality to guide reflection on the human experience. Data were reported according to the Consolidated Criteria for Reporting Qualitative Research. RESULTS: Thirteen categories were identified and framed within the four existentials. Regarding spatiality, end-of-life communication took place in a physical, mental, socio-cultural and professional competence space. With regard to corporeality, interviewees reported difficulties in managing their own feelings and those of family caregivers. For temporality, interviewees reported delays in end-of-life communication due to staffing issues and an increase in urgent and temporary relief admissions to nursing homes. To compensate, they tried to assure that all interactions that did take place were of high quality. Finally, with regard to relationality, interviewees lived end-of-life communication through their relationships with family caregivers and colleagues. The supportive role of colleagues was expressed as teamwork, which helped promote reflexivity about how to tailor communication, manage challenging emotions and situations, set aside time for communication, and prepare family caregivers for death. CONCLUSION: End-of-life communication was an all-encompassing experience for nursing home staff. The supportive role of colleagues was stressed across all existentials, suggesting that teamwork is essential in delivering effective communication at the end-of-life. PATIENT OR PUBLIC CONTRIBUTION: There was no patient or public contribution to this study, which addresses the experiences of nursing home staff only.
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Comunicação , Casas de Saúde , Humanos , Pesquisa Qualitativa , Hermenêutica , MorteRESUMO
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.
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Planejamento Antecipado de Cuidados , Demência , Assistência Terminal , Humanos , Cuidadores , Demência/terapia , Casas de Saúde , Assistência Terminal/métodosRESUMO
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.
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Demência , Assistência Terminal , Cuidadores , Morte , Demência/terapia , Família , Humanos , Cuidados Paliativos/métodos , Folhetos , Conforto do PacienteRESUMO
. Nurses' associations and war in Ukraine. The tragic irruption of war with all its scenarios of horror and destruction in the heart of Europe has documented the depth of the absence of a culture of peace in the international community of States, which have not be willing nor capable to propose a credible platform leading to a diplomatic solution of a conflict where all big powers are complice. While the strictly health related impacts represent a direct and specific interest and challenge for the nursing profession, it is clear that we are facing a future where a new awareness of being citizen of a world which requires a different culture and commitment must become part of our training and strategies of presence in the society. A survey of the positions assumed by the nursing organisation at international level, together with few model reflections on the broader implications of what we are living, is proposed as a first expression of a long term commitment and interest.
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Inquéritos e Questionários , Europa (Continente) , Humanos , UcrâniaRESUMO
End-of-life conversations are among the most challenging of all communication scenarios and on the agenda of several healthcare settings, including nursing homes (NHs). They may be also difficult for experienced healthcare professionals (HCPs). This study explores the difficulties experienced by Italian NH staff in end-of-life conversations with family caregivers (FCs) during COVID-19 pandemic to uncover their educational needs. A qualitative descriptive study based on inductive thematic analysis was performed. Twenty-one HCPs across six Italian NHs were interviewed. Four themes described their experiences of end-of-life conversations: (1) communicating with FCs over the overall disease trajectory; (2) managing challenging emotions and situations; (3) establishing a partnership between HCPs and FCs; (4) addressing HCPs' communication skills needs. HCPs had to face multiple challenging situations that varied across the care period as well as complex emotions such as anxiety, guilt, uncertainty, fear, anger, or suffering, which required tailored answers. COVID-19 pandemic increased FCs' aggressive behaviors, their distrust, and uncertainty due to visitation restrictions. HCPs had to overcome this by developing a set of strategies, including adoption of an active-listening approach, supportive communication, and explicit acknowledgement of FCs' emotions. Since communication needs were mostly practical in nature, HCPs valued practical communication training.
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COVID-19 , Assistência Terminal , COVID-19/epidemiologia , Cuidadores/psicologia , Comunicação , Humanos , Casas de Saúde , Pandemias , SARS-CoV-2 , Assistência Terminal/psicologiaRESUMO
Health and social care professionals (HCPs) who work in nursing homes (NHs) are increasingly required to sustain serious illness conversations about care goals and preferences. Although these conversations may also be challenging for experienced HCPs and the literature recognizes high-quality communication as key to providing patient-centered care, so far, no specific educational program has been developed for the NH setting to improve HCPs' communication skills. Our study aims to test the feasibility and potential effectiveness of an innovative, blended communication skills training program (Teach-to-Communicate) targeting the HCPs who work in NHs. This program includes classroom-based theory, experiential learning, and e-learning, and relies on interdisciplinary contexts and several didactic methods. The study consists of two phases: phase I is the development of written resources that employ focus group discussion involving field experts and external feedback from key stakeholders. Phase II consists of a multicenter, pilot, pre-post study with nested qualitative study. The Teach-to-Communicate training program is expected to enhance the quality of communication in NH and HCPs' confidence in sustaining serious illness conversations, reduce family carers' psycho-emotional burden and improve their satisfaction with the care received, and increase advance care planning documentation. Our protocol will provide insight for future researchers, healthcare providers, and policymakers and pave the way for blended educational approaches in the field of communication skills training.