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BACKGROUND: Vietnam is undergoing a rapid epidemiological transition with a considerable burden of non-communicable diseases (NCDs), especially hypertension and diabetes (T2DM). Continuity of care (COC) is widely acknowledged as a benchmark for an efficient health system. This study aimed to determine the COC level for hypertension and T2DM within and across care levels and to investigate its associations with health outcomes and disease control. METHODS: A cross-sectional study was conducted on 602 people with T2DM and/or hypertension managed in primary care settings. We utilized both the Nijmegen continuity of care questionnaire (NCQ) and the Bice - Boxerman continuity of care index (COCI) to comprehensively measure three domains of COC: interpersonal, informational, and management continuity. ANOVA, paired-sample t-test, and bivariate and multivariable logistic regression analysis were performed to examine the predictors of COC. RESULTS: Mean values of COC indices were: NCQ: 3.59 and COCI: 0.77. The proportion of people with low NCQ levels was 68.8%, and that with low COCI levels was 47.3%. Primary care offered higher informational continuity than specialists (p < 0.01); management continuity was higher within the primary care team than between primary and specialist care (p < 0.001). Gender, living areas, hospital admission and emergency department encounters, frequency of health visits, disease duration, blood pressure and blood glucose levels, and disease control were demonstrated to be statistically associated with higher levels of COC. CONCLUSIONS: Continuity of primary care is not sufficiently achieved for hypertension and diabetes mellitus in Vietnam. Strengthening robust primary care services, improving the collaboration between healthcare providers through multidisciplinary team-based care and integrated care approach, and promoting patient education programs and shared decision-making interventions are priorities to improve COC for chronic care.
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Diabetes Mellitus Tipo 2 , Hipertensão , Humanos , Diabetes Mellitus Tipo 2/epidemiologia , Diabetes Mellitus Tipo 2/terapia , Estudos Transversais , Vietnã/epidemiologia , Continuidade da Assistência ao Paciente , Hipertensão/epidemiologia , Hipertensão/terapia , Avaliação de Resultados em Cuidados de SaúdeRESUMO
AIM: To provide an evidence-informed program theory (PT) for Interprofessional Education (IPE) that adds to the knowledge base of how IPE in undergraduate health sciences education works. METHODS: We undertook a realist review of the literature and synthesis of the evidence combined with stakeholder experience. Our initial program theory (IPT), built around development, delivery and evaluation of IPE interventions, was tested and refined following an in-depth search of the literature and consultation with stakeholders. The literature (2010-2022) was selected based on the realist criteria of relevance and rigor, as well as on conceptual richness of the studies. RESULTS: Our PT is built upon 124 CMOs (Context of IPE interventions, Mechanisms that fired within that context, and IPE Outcomes), from 58 studies. Our PT comprises an array of elements found in the Context, including traits and behavioral displays of students and facilitators, and discusses four Mechanisms (feeling responsible, feeling enthusiastic/excited, feeling safe to take risks, and feeling ready), which are likely to lead to outcomes related to the Interprofessional Education Collaborative (sub)competencies. DISCUSSION: Results were linked to learning theories to further build our understanding. The PT can serve as a guide for the development, delivery, and evaluation of IPE interventions.
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Since launching health health-promoting settings approach to health by WHO, valuable progress has happened in implementing its holistic concepts in settings such as cities, schools, workplaces, hospitals and healthcare services. However, significant knowledge-intention-success gaps still exist in creating sustainable health-promoting changes in settings. The complexity of the task of bridging this gap has contributed to the call for a complexity-informed paradigm shift to health as well as settings, followed by increasing consultation of relevant complexity theories, frameworks and tools in health research. This paper provides a critical scoping review of the application of complex adaptive system (CAS) theory in settings-based health promotion research. We included 14 papers, mostly qualitative studies, reporting on planning or implementation of change initiatives, less on its evaluation. CAS theory application was often incomplete thereby reducing the potential benefit of using this lens to understand change management. We suggest some recommendations how to comprehensively apply the CAS theory in setting-based health research and to report on all CAS characteristics to enhance the understanding of settings as adaptive health-promoting settings.
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Promoção da Saúde , Instituições Acadêmicas , Humanos , Pesquisa QualitativaRESUMO
Interprofessional communication is crucial for patient care, yet there is a dearth of comprehensive assessment tools essential to train and assess healthcare students. While the Interprofessional Educational Collaborative framework (IPEC) outlines eight sub-competencies, it lacks detailed behavioral indicators. This study aimed to create a repository of interprofessional communication behaviors to complement the IPEC sub-competencies. From 12,448 articles, 55 were selected and thematically analyzed with NVivo18®. We identified 230 interprofessional communication behaviors, organized into 10 themes and 61 sub-themes, aligning with the IPEC sub-competencies. This comprehensive repository could be foundational for developing interprofessional communication assessment tools in healthcare education and aiding healthcare institutions in improving interprofessional communication practices.
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BACKGROUND: The tremendous physical and mental burden that comes with caregiving puts the intimate partners of patients diagnosed with advanced cancer at risk for mental disorders. However, most partners seem to be protected by resilience. Such a resilience process is promoted by certain individual characteristics (e.g., flexibility, positive attitude, internal strength, capacity to balance incoming and outgoing information, and ability to ask for and accept support and advice) and by the availability of a support network, consisting of family, friends, and healthcare professionals. Such a heterogeneous group striving towards the same goals can be considered a complex adaptive system (CAS), a concept stemming from complexity science. AIMS: To study the behavior of the support network through the lens of complexity science and to provide insights to the means by which an available network may promote resilience. METHODS: Nineteen interviews with members from the support networks of eight intimate partners were analyzed deductively using the CAS principles as a coding framework. Subsequently, the quotes under each principle were coded inductively to concretize patterns in the behavior of the support networks. Eventually, the codes were charted into a matrix to identify intra- and inter-CAS similarities, differences, and patterns. FINDINGS: The network's behavior adapts dynamically to the changing circumstances as the patient's prognosis worsens. Furthermore, the behavior is based on internalized basic rules (such as reassuring availability and maintaining communication without being intrusive), attractors (e.g., feeling meaningful, appreciated, or connected), and the history of the support network. However, the interactions are non-linear and often unpredictable due to the context member's own concerns, needs, or emotions. CONCLUSIONS: Applying the lens of complexity science to the behavior of an intimate partner's support network gives us insight into the network's behavioral patterns. Indeed, a support network is a dynamic system that behaves according to the principles of a CAS and adapts resiliently to the changing circumstances as the patient's prognosis worsens. Moreover, the behavior of the support network appears to promote the intimate partner's resilience process throughout the patient's care period.
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Neoplasias , Parceiros Sexuais , Humanos , Parceiros Sexuais/psicologiaRESUMO
BACKGROUND: Cultural competence resides at the core of undergraduate and postgraduate medical and health professional education. The evolution of studies on cultural competence has resulted in the existence of multiple theoretical frameworks and models, each emphasising certain elements of culturally appropriate care, but generally lacking in providing a coherent and systematic approach to teaching this subject. METHODS: Following a meta-ethnographic approach, a systematic search of five databases was undertaken to identify relevant articles published between 1990 and 2022. After citation searching and abstract and full article screening, a consensus was reached on 59 articles for final inclusion. Key constructs and concepts of cultural competence were synthesised and presented as themes, using the lens of critical theory. RESULTS: Three key themes were identified: competences; roles and identities; structural competency. Actionable concepts and themes were incorporated into a new transformative ACT cultural model that consists of three key domains: activate consciousness, connect relations, and transform to true cultural care. CONCLUSION: This critical review provides an up-to-date synthesis of studies that conceptualise cultural competence frameworks and models in international medical and healthcare settings. The ACT cultural model provides a set of guiding principles for culturally appropriate care, to support high-quality educational interventions.
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Competência Cultural , Educação Profissionalizante , Humanos , Atenção à Saúde , Competência Clínica , Antropologia CulturalRESUMO
AIMS AND OBJECTIVES: Gaining insight in how people living with chronic conditions experience primary healthcare within their informal network. BACKGROUND: The primary healthcare system is challenged by the increasing number of people living with chronic conditions. To strengthen chronic care management, literature and policy plans point to a person-centred approach of care (PCC). A first step to identify an appropriate strategy to implement PCC is to gain more insight into the care experiences of these people and their informal caregivers. DESIGN: A phenomenological-hermeneutical philosophy is used. The study is in line with the Consolidated Criteria for Reporting Qualitative Research Guidelines (COREQ). METHOD: In-depth, semi-structured interviews with people living with chronic conditions and informal caregiver dyads (PCDs) (n = 16; 32 individuals) were conducted. An open-ended interview guide was used to elaborate on the PCDs' experiences regarding primary care. A purposive, maximal variation sampling was applied to recruit the participants. RESULTS: Based on sixteen PCDs' reflections, ten themes were identified presenting their experiences with primary care and described quality care as listening and giving attention to what people with chronic conditions want, to what they strive for, and above all to promote their autonomy in a context wherein they are supported by a team of formal caregivers, family and friends. CONCLUSION: To meet the PCDs' needs, self-management should be addressed in an interprofessional environment in which the PCD is an important partner. The findings may facilitate a shift to encourage PCDs in their strengths by enabling them to share their personal goals and by working towards meaningful activities in team collaboration. RELEVANCE TO CLINICAL PRACTICE: Three strategies-self-management support, goal-oriented care, and interprofessional collaboration-have been suggested to improve the PCDs' primary care experiences. These strategies could guide nursing practice in using more and improve high-quality nursing care.
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Cuidadores , Atenção à Saúde , Humanos , Doença Crônica , Pesquisa Qualitativa , Atenção Primária à SaúdeRESUMO
BACKGROUND: Close relatives provide much of the care to people with cancer. As resilience can shield family caregivers from mental health problems, there has been a burgeoning interest in resilience-promoting interventions. However, the evidence necessary for the development of these interventions is scant and unsynthesized. AIM: To create an overall picture of evidence on resilience in cancer caregiving by a theory-driven meta-synthesis. DESIGN: In this systematically constructed review a thematic synthesis approach has been applied. The original findings were coded and structured deductively according to the theoretical framework. Consequently, the codes were organized inductively into themes and subthemes. DATA SOURCES: Through September 2019, five electronic databases were searched for qualitative studies on resilience in cancer caregiving. The search was extended by a supplementary hand search. Seventeen studies met the eligibility criteria. RESULTS: The elements of resilience, as described in the pre-defined theoretical framework of Bonanno, are reflected in the lived experiences of family caregivers. The resilience process starts with the diagnosis of advanced cancer and may result in mental wellbeing, benefit finding, and personal growth. The process is influenced by context elements such as individual history, sociocultural background, caregiver characteristics, and the behavior of the supportive network. A repertoire of coping strategies that caregivers use throughout the caregiving process moderates the resilience process. CONCLUSION: This review and theoretical synthesis reveal key elements of resilience in the process of cancer caregiving, including influencing factors and outcomes. Implications and avenues for further research are discussed.
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Cuidadores , Neoplasias , Adaptação Psicológica , Cuidadores/psicologia , Humanos , Neoplasias/psicologia , Pesquisa QualitativaRESUMO
BACKGROUND: When confronting a partner's diagnosis of advanced cancer, family caregivers are often protected against severe psychological illness by their mental resilience. However, the current COVID-19 pandemic endangers this resilience through the daily threat of contagion exposure, viral transmission, isolation, and fear of death. AIM: To examine the experiences of partners caring for a person with advanced cancer during the COVID-19 pandemic. SETTING: Twelve partners (all under the age of 65) of persons newly diagnosed with advanced cancer immediately before or during the pandemic were interviewed. An interpretative phenomenological approach was used in analyzing the data. FINDINGS: Partners experience the COVID-19 pandemic as "living in a double cage." Due to pandemic mandates and restrictions, the pace of their lives slows. However, COVID-19 does not slow the progression of the cancer, nor does it allow for an escape from the cancer. The pandemic has a significant impact on several elements of resilience. Nevertheless, the participants succeed in adapting and coping in a balanced and creative way despite the new challenges imposed by the pandemic. CONCLUSION: The COVID-19 pandemic challenges one's resilience, a process that, under normal circumstances, may evolve while caring for a partner diagnosed with advanced cancer. Although most partners seem to cope adaptively with both advanced cancer and COVID-19, healthcare professionals should be aware of the risk of exhaustion. Furthermore, it can be presupposed that threatened, contextual factors that may support resilience should be preserved to increase the chances for a resilient outcome.
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COVID-19 , Neoplasias , Resiliência Psicológica , Humanos , Pandemias , Transtornos Fóbicos , SARS-CoV-2RESUMO
CONTEXT: The transition from medical student to junior doctor is challenging. Junior doctors need to become part of the physician community of practice (CoP), while dealing with new responsibilities, tasks and expectations. At the same time, they need to learn how to navigate the frontiers and intersections with the other communities of practice that form the Landscape of Practice (LoP). This study aims to understand how junior doctors experience interprofessional collaboration (IPC) and what elements shape these experiences considering their transition to clinical practice. METHODS: In this multicentre qualitative study, 13 junior doctors individually drew two rich pictures of IPC experiences, one positive and one negative. A rich picture is a visual representation, a drawing of a particular situation intended to capture the complex and non-verbal elements of an experience. We used semi-structured interviews to deepen the understanding of junior doctors' depicted IPC experiences. We analysed both visual materials and interview transcripts iteratively, for which we adopted an inductive constructivist thematic analysis. RESULTS: While transitioning into a doctor, junior doctors become foremost members of the physician CoP and shape their professional identity based on perceived values in their physician community. Interprofessional learning occurs implicitly, without input from the interprofessional team. As a result, junior doctors struggle to bridge the gap between themselves and the interprofessional team, preventing IPC learning from developing into an integrative process. This professional isolation leaves junior doctors wandering the landscape of practice without understanding roles, attitudes and expectations of others. CONCLUSIONS: Learning IPC needs to become a collective endeavour and an explicit learning goal, based on multisource feedback to take advantage of the expertise already present in the LoP. Furthermore, junior doctors need a safe environment to embrace and reflect on the emotions aroused by interprofessional interactions, under the guidance of experienced facilitators.
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Corpo Clínico Hospitalar , Médicos , Humanos , Relações Interprofissionais , Pesquisa QualitativaRESUMO
BACKGROUND: Little is known about the nature and intensity of palliative care needs of hospitalised older people. We aimed to describe the palliative care symptoms, concerns, and well-being of older people with frailty and complex care needs upon discharge from hospital to home, and to examine the relationship between palliative care symptoms and concerns, and well-being. METHODS: Cross-sectional study using baseline survey data of a pilot randomised controlled trial. Hospital staff identified patients (≥ 70 years) about to be discharged home, with a clinical frailty score of 5 to 7 and complex needs based on physician-assessment. Patients completed structured interviews, using the Integrated Palliative Care Outcome Scale (IPOS), ICEpop CAPability measure for supportive care (ICECAP-SCM) and IPOS Views on Care quality of life item. We calculated descriptive statistics. RESULTS: We assessed 37 older people with complex needs (49% women, mean age 84, standard deviation 6.1). Symptoms rated as causing severe problems were weakness (46%) and poor mobility (40%); 75% reported that their family felt anxious at least occasionally. Of the 17 IPOS items, 41% of patients rated five or more symptoms as causing severe problems, while 14% reported that they were not severely affected by any symptom. 87% expressed feeling supported. There was a negative correlation between symptoms (IPOS) and well-being (ICECAP); r = -0.41. CONCLUSION: We identified a large variety of symptoms experienced by older people identified as having frailty and complex needs upon hospital discharge. Many were severely affected by multiple needs. This population should be considered for palliative care follow-up at home.
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Fragilidade , Cuidados Paliativos , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Hospitais , Humanos , Masculino , Alta do Paciente , Qualidade de VidaRESUMO
INTRODUCTION: To date, no study has investigated the impact of polypharmacy (use of ≥5 medications concurrently) on health-related quality of life (HRQOL) and psychological distress in a combined sample of chronic disease patients and patients with multimorbidity, using diverse HRQOL measures. This study aimed to explore the association between polypharmacy and HRQOL/psychological distress by using data from a cross-sectional study in Flanders (Belgium). METHODS: We analyzed cross-sectional survey data on 544 chronically ill patients recruited from June 2019 through June 2021. HRQOL was measured with the EuroQol-5 Dimension-5 Level questionnaire (EQ-5D-5L) and the 12-Item Short Form Health Survey (SF-12); psychological distress was measured with the Hospital Anxiety and Depression Scale (HADS). Multiple linear regression models were built to assess the association between polypharmacy and HRQOL/psychological distress. RESULTS: Overall, compared with patients without polypharmacy, patients with polypharmacy reported worse EQ-5D-5L index values, EuroQol visual analogue scale (EQ-VAS) scores, SF-12 physical component scores (PCS), SF-12 mental component scores (MCS), and HADS anxiety and depression subscales. In the final regression model adjusting for age, sex, educational attainment, and multimorbidity, polypharmacy remained significantly associated with lower HRQOL in terms of the EQ-5D-5L index (ß = -0.12; P = .008), EQ-VAS (ß = -0.11; P = .01), and SF-12 PCS (ß = -0.15; P = .002) but not with psychological distress (HADS) and SF-12 MCS. CONCLUSION: This study found that polypharmacy was negatively associated with the physical domain of HRQOL, but not with the mental domain, among patients with chronic diseases. These results may be especially important for patients with multimorbidity, given their greater risk of polypharmacy.
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Angústia Psicológica , Qualidade de Vida , Doença Crônica , Estudos Transversais , Humanos , Polimedicação , Qualidade de Vida/psicologia , Inquéritos e QuestionáriosRESUMO
Doctors and patients rely on verbal and nonverbal resources to co-construct clinical empathy. In language-discordant consultations, interpreters' communicative actions might compromise this process. We aim to explore doctors, patients, and professional interpreters' perspectives on their own and others' actions during their empathic interaction in interpreter-mediated consultations (IMCs). We analyzed 20 video stimulated recall interviews with doctors, patients, and interpreters using qualitative content analysis. Doctors and patients found ways to connect with each other on the level of empathic communication (EC) that is not limited by interpreters' alterations or disengaged demeanor. Some aspects of doctors and interpreters' professional practices might jeopardize the co-construction of EC in IMCs. The co-construction of EC in IMCs is not only subject to participants' communicative (inter)actions, but also to organizational and subjective factors. These results provide evidence of the transactional process between the behavioral, cognitive, and affective components of clinical empathy in the context of IMCs.
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Empatia , Multilinguismo , Comunicação , Barreiras de Comunicação , Humanos , Relações Médico-Paciente , Encaminhamento e Consulta , TraduçãoRESUMO
BACKGROUND: Continuity of care is challenging when transferring patients across palliative care settings. These transfers are common due to the complexity of palliative care, which has increased significantly since the advent of palliative care services. It is unclear how palliative care services and professionals currently collaborate and communicate to ensure the continuity of care across settings, and how patient and family members are involved. AIM: To explore healthcare professionals' experiences regarding the communicative aspects of inter-professional collaboration and the involvement of patient and family members. DESIGN: Qualitative design, including focus group discussions. SETTING/PARTICIPANTS: The study focused on one palliative care network in Belgium and involved all palliative care settings: hospital, hospital's palliative care unit, home care, nursing home. Nine group discussions were conducted, with diverse professionals (n = 53) from different care settings. RESULTS: Timely and effective inter-professional information exchange was considered fundamental. A perceived barrier for interprofessional collaboration was the lack of a shared electronic health record. Efficiency regarding multidisciplinary team meetings and inter-professional communication were subject to improvement.A striking study finding was the perceived insufficient open communication of specialists towards patients and the lack of shared decision making. This not only hampered advance care planning discussions and early integration of palliative home care, but also the functioning of other professionals. CONCLUSION: From the perspective of the integrated care framework, several areas of improvement on different levels of care and collaboration are identified. Support from policymakers and researchers is required to achieve integrated palliative care in regional networks.
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Atenção à Saúde , Cuidados Paliativos , Bélgica , Grupos Focais , Humanos , Pesquisa QualitativaRESUMO
BACKGROUND: Extensive debate surrounds the practice of continuous sedation until death within end-of-life care. AIM: To provide insight into existing initiatives to support the practice of continuous sedation until death and assess their feasibility and effectiveness. DESIGN: Systematic review and narrative synthesis, registered on PROSPERO (CRD42020149630). DATA SOURCES: Records were searched through MEDLINE, EMBASE, CENTRAL, CINAHL, and Web of Science from inception to April 16 2020. Peer-reviewed studies reporting original data on initiatives to support the practice of continuous sedation were included for review. RESULTS: Twenty-one studies met the criteria and were included. Initiatives were focused on assessment tools of consciousness and discomfort (9), the use of guidelines and protocols (8), and expert consultation (3). All initiatives were reported as useful, acceptable, and feasible. Studies on the use of monitoring devices showed that a small proportion of patients were found to be awake, despite the patient being unresponsive according to the observer-based sedation scales. However, the wide range of values of these monitoring devices for comfortable and adequately sedated patients seems to hamper its overall implementation in daily clinical practice. Physicians reported changes in practice conform to guideline recommendations but the shift was modest at best. Expert consultation was regarded as supportive when sufficient expertise is lacking and helpful in avoiding possibly unnecessary sedations. CONCLUSIONS: The reviewed initiatives may contribute to improvement of continuous sedation until death, though their evidence base is rather limited. More insight is needed into their feasibility, preconditions for effective implementation and impact in actual practice.
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Anestesia , Médicos , Assistência Terminal , Humanos , Cuidados Paliativos , Melhoria de QualidadeRESUMO
BACKGROUND: Palliative care is advocated for older people with frailty and multimorbidity in the community. However, how to best deliver it is unclear. AIM: To develop and model an intervention of short-term specialized palliative care that is initiated timely based on complex care needs and integrated with primary care for older people with frailty and their family, detailing the intervention components, outcomes and preconditions needed for implementation, using a novel theoretical approach. DESIGN: Observational study informed by the UK MRC guidance for complex interventions integrated with a Theory of Change (i.e. hypothetical causal pathway to impact) approach. We synthesized evidence from a systematic review, semi-structured interviews, group discussions and Theory of Change workshops. SETTING: Primary care in Flanders, Belgium. RESULTS: We identified patient and family carer-related long-term outcomes and preconditions to achieve them for example, service providers are willing and able to deliver the intervention. The intervention components included implementation components, for example, training for service providers, and a core component, that is, provision of timely short-term specialized palliative care by a specialized palliative home care nurse. The latter includes: short-term service delivery; collaborative and integrative working within primary care; delivery of holistic needs- and capacity-based care; person-centred and family-focussed; and goal-oriented pro-active care. CONCLUSIONS: The Theory of Change approach allowed us to identify multiple intervention components targeting different stakeholders to achieve the desired outcomes. It also facilitated a detailed description of the intervention which aims to increase replicability and effective comparisons with other interventions.
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Cuidadores , Fragilidade , Idoso , Bélgica , Humanos , Estudos Observacionais como Assunto , Cuidados Paliativos , Atenção Primária à SaúdeRESUMO
INTRODUCTION: Workplace-based learning conversations can be a good opportunity for supervisors and trainees to learn from each other. When both professionals discuss their specific knowledge openly with each other, learning conversations may be a useful educational tool, for instance for learning how to apply evidence-based medicine (EBM) in the workplace. We do, however, need a better understanding of how the exchange of knowledge provides opportunities for such bidirectional learning. The aim of this study was therefore to analyse how trainees and supervisors currently handle bidirectional learning opportunities by describing in detail how supervisors respond to knowledge expressed by trainees during a learning conversation. METHOD: We video-recorded learning conversations between supervisors and trainees in general practice (GP). Within these learning conversations, EBM discussions on medical topics were selected and transcribed. We then identified, analysed using Conversation Analysis (CA) and categorised each expression of knowledge by the trainee and the supervisor's subsequent response. RESULTS: We found that when a trainee expresses knowledge during the learning conversation, supervisors either (a) refute the expressed knowledge, (b) immediately suggest an alternative or (c) pose (additional) questions. These responses have consequences for the learning opportunities of both trainee and supervisor: it is only when supervisors pose further questions that trainees are encouraged to elaborate on their knowledge, leading to a bidirectional learning opportunity. DISCUSSION: Improving EBM learning opportunities for both supervisors and trainees requires more than simply instructing trainees to express knowledge-based-for instance-on recent evidence more often. Inflexible institutional roles related to historical claims of supervisors' epistemic authority hamper bidirectional learning. Posing open questions during learning conversations enhances the flexibility of institutional roles while also creating bidirectional learning opportunities.
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Competência Clínica , Medicina Geral , Educação de Pós-Graduação em Medicina , Medicina de Família e Comunidade , Medicina Geral/educação , Humanos , Pesquisa QualitativaRESUMO
BACKGROUND: Little is known about how patients with low socioeconomic status (SES) experience their chronic disease, and how it impacts health-related quality of life (HRQoL). Compared to their more affluent counterparts, worse outcomes have been reported. A better understanding of the domains of HRQoL that are relevant to these specific populations is therefore needed. We explored the experiences of living with a chronic disease in low SES persons. METHODS: A qualitative interview study was performed in Flanders, Belgium. Semi-structured interviews were conducted in chronically ill patients, selected through purposive sampling. Interviews were audio-recorded and transcribed verbatim. Analysis followed an inductive and iterative approach. RESULTS: Fifteen patients were interviewed. Six major themes were identified: a heavy bag to carry, loss of autonomous life, inner and outer loneliness, emotional imbalance, unmet need for support, and coping strategies. Patients experienced their illness as an additional problem on top of all other problems (i.e. financial/social problems, traumatic life events). In general, the disease burden and non-disease burden were mutually reinforcing, resulting in greater dependency, greater risk of social isolation, greater psychological distress, and greater risk of impaired HRQoL. CONCLUSIONS: This study is the first to provide detailed insight into the experiences of living with a chronic disease in low SES persons. A conceptual model is proposed that can be used in daily clinical practice to raise awareness among clinicians and health care providers that the patient's needs go beyond the disease itself. Future research is needed to validate and test the model.
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Adaptação Psicológica , Qualidade de Vida , Doença Crônica , Humanos , Pesquisa Qualitativa , Classe SocialRESUMO
BACKGROUND: Advance care planning (ACP), a process of communication about patients' preferences for future medical care, should be initiated in a timely manner. Ideally situated for this initiation is the general practitioner (GP). The intervention to improve the initiation of ACP for patients with a chronic life-limiting illness in general practice (ACP-GP) includes an ACP workbook for patients, ACP communication training for GPs, planned ACP conversations, and documentation of ACP conversation outcomes in a structured template. We present the study protocol of a Phase-III randomized controlled trial (RCT) of ACP-GP that aims to evaluate its effects on outcomes at the GP, patient, and surrogate decision maker (SDM) levels; and to assess the implementation process of the intervention. METHODS: This RCT will take place in Flanders, Belgium. Thirty-six GPs, 108 patients with a chronic, life-limiting illness, and their (potential) SDM will be recruited, then cluster-randomized to the ACP-GP intervention or the control condition. The primary outcome for GPs is ACP self-efficacy; primary outcome for patients is level of ACP engagement. Secondary outcomes for GPs are ACP practices, knowledge and attitudes; and documentation of ACP discussion outcomes. Secondary outcomes for patients are quality of life; anxiety; depression; appointment of an SDM; completion of new ACP documents; thinking about ACP; and communication with the GP. The secondary outcome for the SDM is level of engagement with ACP. A process evaluation will assess the recruitment and implementation of the intervention using the RE-AIM framework. DISCUSSION: While the general practice setting holds promise for timely initiation of ACP, there is a lack of randomized trial studies evaluating the effectiveness of ACP interventions implemented in this setting. After this Phase-III RCT, we will be able to present valuable evidence of the effects of this ACP-GP intervention, with the potential for offering a well-tested and evaluated program to be implemented in general practice. The results of the process evaluation will provide insight into what contributes to or detracts from implementation success, as well as how the intervention can be adapted to specific contexts or needs. TRIAL REGISTRATION: Prospectively registered at with ISRCTN ( ISRCTN12995230 ); registered 19/06/2020.
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Planejamento Antecipado de Cuidados , Medicina Geral , Clínicos Gerais , Doença Crônica , Comunicação , Humanos , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
Phenomenon: Supervisors and trainees can learn skills related to evidence-based medicine from each other in the workplace by collaborating and interacting, in this way benefiting from each other's strengths. This study explores supervisors' perceptions of how they currently learn evidence-based medicine by engaging in learning conversations with their trainee. Approach: Semi-structured, video-stimulated elicitation interviews were held with twenty-two Dutch and Belgian supervisors in general practice. Supervisors were shown fragments of their video-recorded learning conversations, allowing them to reflect. Recorded interviews were analyzed using a grounded theory-based approach.Findings: Supervisors did not immediately perceive workplace learning conversations as an opportunity to learn evidence-based medicine from their trainee. They mostly saw these conversations as a learning opportunity for trainees and a chance to maintain the quality of care within their practice. Nevertheless, during the interviews, supervisors did acknowledge that learning conversations help them to gain up-to-date knowledge and search skills or more awareness of their own knowledge or gaps in their knowledge. Not identified as a learning outcome was how to apply evidence-based medicine within a clinical practice by combining evidence with clinical expertise and the patient's preferences. Insights: Supervisors acknowledge that they learn elements of the three aspects of evidence-based medicine by having learning conversations with their trainee, but they currently see this as secondary to the trainee's learning process. Emphasizing opportunities for bidirectional learning could improve learning of evidence-based medicine during workplace learning conversations.