Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 90.218
Filtrar
1.
Int J Qual Stud Health Well-being ; 18(1): 2170018, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36727528

RESUMO

PURPOSE: The curative oesophageal cancer continuum-diagnosis, treatment and survivorship represents different phases with its own challenges for the involved parties. The process of treatment decisions and interactions between patients with oesophageal cancer (EC), relatives and health professionals is vital yet not well described. The purpose of the study was to explore patients' and relatives' experiences with the process of decision-making through the EC illness and treatment trajectory. METHODS: Longitudinal explorative design was employed based on ethnographic fieldwork in the form of participant observations inspired by the American anthropologist James Spradley. RESULTS: Sixteen patients and 18 relatives were recruited for participant observations. In total, 184 hours of participant observations were conducted. The study showed that decision-making was filled with tension and edginess. Four themes were identified: 1) The encounter with the medical authority, 2) The need to see the big picture in the treatment trajectory, 3) A predetermined treatment decision, and 4) Meeting numerous different health professionals. CONCLUSION: The EC trajectory and decision-making were filled with anxiety. Patients and relatives lacked an overview of the treatment pathway, leading to their role in decision-making often being governed by the medical authority. Timing information and continuity are vital factors in decision-making.


Assuntos
Neoplasias Esofágicas , Família , Humanos , Tomada de Decisões , Pesquisa Qualitativa , Antropologia Cultural , Neoplasias Esofágicas/terapia
2.
Singapore Med J ; 64(1): 37-44, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36722515

RESUMO

Knowledge of an underlying genetic predisposition to cancer allows the use of personalised prognostic, preventive and therapeutic strategies for the patient and carries clinical implications for family members. Despite great progress, we identified six challenging areas in the management of patients with hereditary cancer predisposition syndromes and suggest recommendations to aid in their resolution. These include the potential for finding unexpected germline variants through somatic tumour testing, optimal risk management of patients with hereditary conditions involving moderate-penetrance genes, role of polygenic risk score in an under-represented Asian population, management of variants of uncertain significance, clinical trials in patients with germline pathogenic variants and technology in genetic counselling. Addressing these barriers will aid the next step forward in precision medicine in Singapore. All stakeholders in healthcare should be empowered with genetic knowledge to fully leverage the potential of novel genomic insights and implement them to provide better care for our patients.


Assuntos
Neoplasias , Humanos , Singapura , Genótipo , Neoplasias/genética , Neoplasias/terapia , Fatores de Risco , Família
3.
Artigo em Inglês | MEDLINE | ID: mdl-36673810

RESUMO

BACKGROUND: Intention to smoke is an important predictor of future smoking among adolescents. The purpose of our study was to examine the interaction between academic performance and parents/peer tobacco use on adolescents' intention to smoke. METHODS: A multi-stage stratified sampling was used to select participants, involving 9394 students aged between 9-16 years in Changchun city, northeastern China. Multiple logistic regression analyses were conducted to examine the individual effect of academic performance and peer/parental smoking behavior. Stratified logistic regressions were conducted to examine the protective effect of academic performance based on peer or parental smoking. Interaction effects of academic performance × peer/parental smoking on adolescents' intention to smoke were tested. RESULTS: Of all the non-smoking students sampled, 11.9% intended to smoke within the next five years. The individual effect of academic performance and peer/parental smoking was significant. The protective effect of academic performance on the intention to smoke was significant regardless of whether peers smoked or not. However, the protective effect was not significant among adolescents with only maternal smoking and both parental smoking. The current study found the significant interaction effects of academic performance × peer smoking and the academic performance × both parents' smoking. Students with poor academic performance were more likely to intend to smoke if their peers or both parents smoked. CONCLUSION: These preliminary results suggest that peer smoking or smoking by both parents reinforces the association between low academic performance and the intention to smoke among adolescents. Enhancing school engagement, focusing on social interaction among adolescents with low academic performance, and building smoke-free families may reduce adolescents' intention to smoke.


Assuntos
Comportamento do Adolescente , Intenção , Humanos , Adolescente , Criança , Família , Estudantes , Uso de Tabaco , Grupo Associado , Fumar/epidemiologia
4.
Am J Public Health ; 113(2): 224-227, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36652639

RESUMO

Objectives. To describe differences in maternal admissions to the intensive care unit (ICU) and mortality in rural versus urban areas in the United States. Methods. We performed a nationwide analysis and calculated age-standardized rates and rate ratios (RRs) of maternal ICU admission and mortality per 100 000 live births between 2016 and 2019 in rural versus urban areas. Results. From 2016 to 2019, there was no significant increase in age-standardized rates of maternal ICU admissions in rural (170.6-192.3) or urban (161.7-172.4) areas, with a significantly higher rate, albeit a relatively small difference, in rural versus urban areas (2019 RR = 1.14; 95% confidence interval [CI] = 1.04, 1.20). Maternal mortality increased in both rural (66.9-81.7 deaths per 100 000 live births) and urban (38.1-42.3) areas and was nearly 2 times higher in rural areas (2019 RR = 1.93; 95% CI = 1.71, 2.17). Conclusions. Pregnant individuals in rural areas are at higher risk for ICU admission and mortality than are their urban counterparts. Significant increases in maternal mortality occurred in rural and urban areas. Public Health Implications. Public health efforts need to focus on resource-limited rural areas to mitigate geographic disparities in maternal morbidity and mortality. (Am J Public Health. 2023;113(2): 224-227.https://doi.org/10.2105/AJPH.2022.307134).


Assuntos
Família , Mortalidade Materna , Gravidez , Feminino , Humanos , Estados Unidos/epidemiologia , População Urbana , População Rural
5.
NeuroRehabilitation ; 52(1): 47-58, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36617761

RESUMO

BACKGROUND: A strength-based approach in the rehabilitation after traumatic brain injury (TBI) is recommended for patients and their families. However, further exploration of the complexity of individual and family factors is needed. OBJECTIVE: To explore the associations between individual protective resources in patients and family members and the overall family functioning using a strength-based approach. METHODS: Secondary analysis of data collected at baseline in a randomized controlled trial. Structural equation modeling with two latent constructs and six observed variables was performed. Outcome measures included the Resilience Scale for Adults, the Mental Component Summary (SF-36), the General Self-Efficacy Scale, and the Family Adaptability and Cohesion Evaluation Scale-IV. RESULTS: Hundred and twenty-two participants (60 patients, 62 family members) with a mean age of 43 years were included at a median of 11 months post-injury. The final model demonstrated a strong covariance (coefficient = 0.61) between the latent Protective construct and Family functioning. Model-fit statistics indicated an acceptable fit to the data. CONCLUSION: Higher levels of protective resources (resilience, self-efficacy, and mental HRQL) were positively associated with family functioning. These resources should be further assessed in patients and their families, to identify factors that can be strengthened through TBI rehabilitation intervention.


Assuntos
Lesões Encefálicas Traumáticas , Adulto , Humanos , Estudos Transversais , Análise de Classes Latentes , Lesões Encefálicas Traumáticas/reabilitação , Avaliação de Resultados em Cuidados de Saúde , Família
6.
Pediatr Crit Care Med ; 24(1): 34-40, 2023 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-36594798

RESUMO

OBJECTIVES: Discussion of prognosis is an essential component of decision-making family conferences in critical care. We do not know how clinicians convey prognosis to families of critically ill children. We, therefore, aimed to evaluate the frequency of prognostic statements and the message and meaning conveyed through each statement during PICU family conferences. DESIGN: Retrospective, mixed-methods study. SETTING: PICU of a single quaternary medical center. PATIENTS: Critically ill children and their families participating in PICU family conferences of critical medical decision-making. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We analyzed 72 transcripts from audio-recorded PICU family conferences to identify prognostic statements. Descriptive, thematic content analysis was used to elucidate the message and meaning of each prognostic statement. Prognosis was not discussed in 26% (19/72) of family conferences. Of the other (53/72) conferences where prognostic statements were made, 60% (67/112) of statements conveyed a message (i.e., prognostic medical information) and a meaning (i.e., anticipated impact on patient/family). "Messages" of prognostic statements fell within eight themes: uncertain recovery, delayed recovery, progressive decline, escalation of support, attributable complications, no progress, irreversible, and probability of death. "Meanings" of prognostic statements fell within six themes: restoration of health, activities of daily living, additional equipment, prolonged care needs, brain dysfunction, and death. Broadly, clinicians discussed prognostic information in three categories: loss of Time (i.e., prolonged care needs), Function (i.e., additional medical equipment), or Cure (i.e., death). CONCLUSIONS: Nearly in half of discussions (32/72, 44%) where families were asked to make critical medical decisions, clinicians did not provide a prognostic statement including a message and meaning. When discussed, prognostic information was conveyed in three categories: loss of time, function, or cure. Providing families context in this framework, particularly in times of uncertainty, may improve the family's ability to make informed, value-driven medical decisions for their child.


Assuntos
Atividades Cotidianas , Estado Terminal , Humanos , Criança , Estudos Retrospectivos , Estado Terminal/terapia , Prognóstico , Relações Profissional-Família , Família
7.
Sci Prog ; 106(1): 368504221148340, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36594221

RESUMO

Kinesin family member 3A is an important motor protein that participates in various physiological and pathological processes, including normal tissue development, homeostasis maintenance, tumor infiltration, and migration. The wingless-related integration site/ß-catenin signaling pathway is essential for critical molecular mechanisms such as embryonic development, organogenesis, tissue regeneration, and carcinogenesis. Recent studies have examined the molecular mechanisms of kinesin family member 3A, among which the wingless-related integration site/ß-catenin signaling pathway has gained attention. The interaction between kinesin family member 3A and the wingless-related integration site/ß-catenin signaling pathway is compact and complex but is fascinating and worthy of further study. The upregulation and downregulation of kinesin family member 3A influence many diseases and patient survival through the wingless-related integration site/ß-catenin signaling pathway. Therefore, this review mainly focuses on describing the kinesin family member 3A and wingless-related integration site/ß-catenin signaling pathways and their associated diseases.


Assuntos
Cinesinas , beta Catenina , Humanos , beta Catenina/genética , beta Catenina/metabolismo , Cinesinas/genética , Cinesinas/metabolismo , Via de Sinalização Wnt , Família
9.
Br J Hosp Med (Lond) ; 84(1): 1-6, 2023 Jan 02.
Artigo em Inglês | MEDLINE | ID: mdl-36708350

RESUMO

Unintended pregnancies are linked to multiple poor maternal and child outcomes. In Britain one in six pregnancies is unplanned (Wellings et al, 2013). Each time a patient presents to hospital, there is an opportunity to address any unmet contraceptive needs, giving patients greater control over pregnancy planning. This article outlines the three options for emergency contraception and discusses simple options for starting an ongoing, regular method of contraception in hospital. The authors recommend signposting patients to online information sources, sexual health centres or their GP for further management.


Assuntos
Anticoncepção , Anticoncepcionais , Gravidez , Feminino , Criança , Humanos , Família
10.
BMC Prim Care ; 24(1): 18, 2023 01 17.
Artigo em Inglês | MEDLINE | ID: mdl-36650437

RESUMO

BACKGROUND: The study was done to examine the effectiveness of peer-to-peer education on increasing health literacy, knowledge s, and observance of coronavirus disease (COVID-19) health prevention protocols in vulnerable adolescents. METHOD: The study was a one-group intervention (before and after the intervention) that was performed on 1200 vulnerable adolescents living in varamin. The educational intervention was presented to adolescents in a face-to-face session. In the next step, the adolescents were taught the information received by three members of their families. Data were evaluated using a self-designed questionnaire before, and three months after the intervention. The paired t-test was used to compare scores of health literacy, compliance, and knowledge before and after the intervention at a 0.05 confidence level. The Multiple linear regression model was used to determine the predictive factors of observance of COVID-19 preventive behaviors. RESULTS: The most of adolescents were in the age group of 14 to 18 years (60%) and most of them were girls (61.5%). The most important source of information about COVID-19 disease was radio and television (59.6%). The results showed that the effectiveness of the intervention in increasing the adolescents' health literacy, knowledge, and adherence to preventive behaviors were 40%, 30%, and 23%, respectively. The effectiveness of the intervention in increasing their families' health literacy and adherence to the protocols were 11% and 20%, respectively (p = 0.001). DISCUSSION: Involving volunteer adolescents as health ambassadors and transmitting messages and methods of promoting personal protection against COVID-19 epidemics to family members had a significant effect on increasing the knowledge and adherence to the health procedures.


Assuntos
COVID-19 , Letramento em Saúde , Feminino , Humanos , Adolescente , Masculino , COVID-19/epidemiologia , COVID-19/prevenção & controle , Inquéritos e Questionários , Família , Conhecimentos, Atitudes e Prática em Saúde
11.
Psicol. educ. (Madr.) ; 29(1): 25-33, Ene. 2023. tab
Artigo em Inglês | IBECS | ID: ibc-215008

RESUMO

Implementation research addresses how well a programme is conducted when applied in real-world conditions. However, research based on quality standards is still scarce as it requires monitoring context, process, and participant response. This study applies implementation quality standards to 57 Spanish parenting and family support programmes identified in the COST European Family Support Network project, using an ten-component evaluation sheet sheet. Descriptive analyses showed a good implementation level. The latent profile analysis identified four patterns defined by programme setting: profile 1, Social Services/NGO setting (21.1%), profile 2, Health setting (31.6%), profile 3, Multi-setting (14%), and profile 4, Educational setting (33.3%), differing in professional discipline, training, participant response, and professional perception of implementation. Profile memberships were related to programme outcomes, scaling up, and sustainability. Findings illustrate conceptual and practical challenges that researchers and professionals usually encounter during implementation, and the efforts required to deliver programmes effectively in real-world settings in Spain.(AU)


La investigación sobre implementación se ocupa de la calidad con la que se aplica un programa en condiciones del mundo real. Sin embargo, la investigación basada en patrones de calidad es aún escasa, ya que requiere supervisar el contexto, el proceso y la respuesta de los participantes. El presente estudio aplica los patrones de calidad a 57 programas españoles de apoyo parental y familiar identificados en el proyecto COST-European Family Support Network, enlos que se utilizó una hoja de evaluación de diez componentes. Los análisis descriptivos mostraron un buen nivel de implementación. El análisis de clases latentes detectó cuatro perfiles definidos por el entorno donde se aplica el programa: el perfil 1, contexto de los servicios sociales/ONG (21.1%), el perfil 2, contexto sanitario (31.6%), el perfil 3, diversos contextos (14%), y el perfil 4, entorno educativo (33.3%), que difieren en la disciplina del profesional, la formación, las respuestas de los participantes y la percepción que tiene el profesional sobre la implementación. La pertenencia a los diversos perfiles se relacionaba con los resultados del programa, su ampliación a gran escala y la sostenibilidad. Los resultados ponen de manifiesto los desafíos conceptuales y prácticos que tanto investigadores como profesionales suelen encontrar durante la implementación, así como los esfuerzos necesarios para aplicar los programas de forma efectiva en contextos reales en España.(AU)


Assuntos
Humanos , Masculino , Feminino , Prática Clínica Baseada em Evidências , Família , Saúde da Família , Relações Familiares , Poder Familiar , Relações Pai-Filho , Psicologia , Psicologia Educacional , Espanha
12.
Psicol. educ. (Madr.) ; 29(1): 35-43, Ene. 2023. tab
Artigo em Inglês | IBECS | ID: ibc-215009

RESUMO

Since the well-known publication of the Society for Prevention Research about standards for evidence related to research on prevention interventions, a rigorous evaluation is considered one of the main requirements for evidence-based programmes. Despite their importance, many programmes do not include evaluation designs that meet the most widely agreed quality standards. The aim of this study was to examine the evaluation processes of fifty-seven Spanish programmes identified in the context of the COST European Family Support Network. The obtained results provide a fairly positive picture of the quality of programme evaluation standards, although more designs that include a control group, follow-up evaluations assessing long-term effects, and the evaluation of child and indirect outcomes are needed. The results are discussed from a comprehensive and plural perspective of evaluation which, in addition to methodological rigor, considers the usefulness, feasibility, and ethical rigor of evaluation research.(AU)


A partir de las propuestas de la Society for Prevention Research sobre los estándares de evidencia necesarios para las intervenciones preventivas, contar con una evaluación rigurosa se considera como uno de los principales requisitos de los programas basados en la evidencia. A pesar de su importancia, muchos programas de apoyo familiar no cuentan con diseños de evaluación que cumplan con los estándares de calidad más consensuados. El objetivo de este artículo fue analizar los procesos de evaluación de cincuenta y siete programas españoles identificados en el marco del proyecto COST European Family Support Network. Los resultados obtenidos muestran una imagen bastante positiva de los estándares de calidad que caracterizan la evaluación de los programas, aunque es necesario ampliar el número de diseños que incluyan grupos de comparación, que contemplen medidas de los efectos en el bienestar infantil y que lleven a cabo evaluaciones de seguimiento para medir los efectos a largo plazo de las intervenciones. Se analizan los resultados desde un enfoque plural de la evaluación, que además del rigor metodológico considera la necesidad de tener en cuenta la utilidad, la viabilidad y el rigor ético de las investigaciones de evaluación.(AU)


Assuntos
Humanos , Masculino , Feminino , Avaliação de Programas e Projetos de Saúde , Família , Relações Familiares , Poder Familiar , Relações Pai-Filho , Psicologia , Psicologia Educacional , Espanha
13.
Psicol. educ. (Madr.) ; 29(1): 45-53, Ene. 2023. tab
Artigo em Inglês | IBECS | ID: ibc-215010

RESUMO

A description is made of the quality of Spanish family support programmes, based on their impact, dissemination, scaling up in communities, and sustainability; 57 implemented programmes with informed evidence were selected by EurofamNet. Most of the programmes were shown to make a positive impact, using quantitative methodologies, and they were manualized, while about half of them defined the core contents and included professional training. From a cluster analysis of programmes with scaling up, those with a high and moderate level of systematization were identified, based on the existence of defined core contents, implementation conditions, institutional support, professional training, and reports of findings. The highly systematized programmes were characterized by a greater use of mixed methodologies, their scientific dissemination through different means, and their inclusion in services. A programme quality analysis is proposed, taking an integrated approach that relates the programme’s impact with its design, implementation, and evaluation of sustainability.(AU)


En este trabajo se presenta una descripción de la calidad de los programas españoles de apoyo a las familias, basándose en su impacto, difusión, diseminación institucional y sostenibilidad. En el marco de EurofamNet se seleccionaron 57 programas implementados con evidencia fundamentada. La mayoría de los programas mostraron un impacto positivo utilizando metodologías cuantitativas y estaban manualizados, mientras que cerca de la mitad de ellos definían los contenidos clave e incluían la formación de los profesionales. A partir de un análisis de conglomerados se identificaron los que tenían un nivel de sistematización alto y moderado, definidos los contenidos clave y las condiciones de implementación, apoyo institucional, formación profesional e informes de resultados. Los programas con alto nivel de sistematización se caracterizaron por un mayor uso de metodologías mixtas, su difusión científica a través de diferentes medios y su inclusión en las instituciones. Se propone un análisis de la calidad de los programas, con un enfoque integrado que relacione el impacto del programa con su diseño, implementación y la evaluación de la sostenibilidad.(AU)


Assuntos
Humanos , Masculino , Feminino , Poder Familiar , Educação não Profissionalizante , Família , Educação , Avaliação de Programas e Projetos de Saúde , Espanha , Psicologia Educacional
14.
Artigo em Inglês | IBECS | ID: ibc-214645

RESUMO

Background/Objectives: Current research has identified direct victimization at home as one of the main predictors of child-to-parent violence (CPV). However, the mechanisms involved in this relationship have not been studied. Thus, we first analyze the differences between CPV offenders and offenders who have committed other types of offenses, as well as the differences between two types of CPV offenders: specialists (those who have only committed CPV) and generalists (those who have committed CPV in addition to other offenses), in multiple risk factors. Next, we specifically examine direct victimization at home and its relationship with social-cognitive processing in CPV. Method: The sample consisted of 208 Spanish young offenders recruited from the Juvenile Justice Service (163 males) aged 14-20 years. Concretely, 83 were CPV offenders, 126 other offenders and concerning the CPV group, 57 were specialists and 26 generalists. A wide range of individual, family, and social variables were evaluated. Results: Compared to other offenders, CPV offenders show more socio-cognitive difficulties, less parental warmth and more parental criticism/rejection, more direct victimization at home and more vicarious victimization at school and in the street. Specialist and generalist CPV offenders differ significantly in their characteristics, with the generalists showing a more negative profile than the specialists. (AU)


Antecedentes/Objetivos: La investigación actual ha identificado a la victimización directa en el hogar como uno de los principales predictores de la violencia filio-parental (VFP). Sin embargo, los mecanismos implicados en esta relación no han sido estudiados. Así, en el presente estudio analizamos, en primer lugar, las diferencias entre jóvenes infractores con delitos relacionados con la VFP y jóvenes infractores con otro tipo de delitos, así como las diferencias entre dos tipos de infractores: especialistas (los que han cometido sólo delitos relacionados con la VFP) y generalistas (los que han cometido delitos relacionados con la VFP y además otros delitos), en múltiples factores de riesgo. A continuación, examinamos específicamente la victimización directa en el hogar y su relación con el procesamiento socio-cognitivo en la VFP. Método: La muestra estuvo compuesta por 208 jóvenes infractores españoles reclutados en el Servicio de Justicia Juvenil (163 chicos) con edades comprendidas entre los 14 y los 20 años. Concretamente, 83 con delitos relacionados con la VFP (57 especialistas y 26 generalistas) y 126 con otros delitos. Se evaluó una amplia gama de variables individuales, familiares y sociales. Resultados: En comparación con otros infractores, los jóvenes con delitos relacionados con la VFP muestran más dificultades socio-cognitivas, menos calidez parental y más crítica/rechazo parental, más victimización directa en el hogar y más victimización vicaria en la escuela y en la calle. Los especialistas y generalistas difieren significativamente en sus características, mostrando los generalistas un perfil más negativo que los especialistas. (AU)


Assuntos
Humanos , Violência Doméstica , Vítimas de Crime , Ira , Prática Profissional , Família
15.
An. pediatr. (2003. Ed. impr.) ; 98(1): 48-57, ene. 2023. ilus, tab
Artigo em Espanhol | IBECS | ID: ibc-214786

RESUMO

Introducción: Este trabajo analiza las propiedades psicométricas de la versión en castellano del Cuestionario de calidad de vida pediátrica módulo de impacto familiar (PedsQL FIM) en población argentina. Pacientes y métodos: Se obtuvo una muestra de 232 cuidadores, 108 de niños con enfermedades crónicas (M=9,54, DE=4,43) y 124 de niños de población general (M=12,37, DE=4,6). Resultados: La validez del instrumento se estudió a través del método de grupos contrastados, encontrando diferencias significativas en la escala total y subdimensiones de la escala (p<0,01). A su vez, se realizó un análisis factorial exploratorio en el que se encontró un modelo de 8 factores explicando el 74,02% de la varianza total. La confiabilidad fue estudiada a través del coeficiente alfa de Cronbach y se encontró un valor alto de consistencia interna α=0,95. Conclusiones: El instrumento PedsQL demostró ser una herramienta válida y confiable para estudiar el impacto que tiene una condición pediátrica crónica a nivel de la calidad de vida del cuidador y del funcionamiento familiar. (AU)


Introduction: This study analysed the psychometric properties of the Spanish version of the Pediatric Quality of Life Questionnaire Family Impact Module (PedsQL FIM) in the Argentinian population. Patients and methods: The sample included 232 caregivers, of who 108 were parents of children with chronic diseases (mean, 9.54; standard deviation [SD], 4.43) and 124 parents of children in the general population (mean, 12.37; SD, 4.6). Results: We assessed the validity of the instrument with the known-groups method, finding significant differences between the case and control groups in the overall and subscale scores (P<.01). We also assessed test validity by means of exploratory factor analysis, which yielded an 8-factor model that explained 74.03% of the variance. We assessed reliability with the Cronbach alpha and found a high internal consistency (α=.95). Conclusion: The PedsQL module proved to be a valid and reliable tool to assess the impact of a chronic paediatric condition on caregiver quality of life and family functioning.


Assuntos
Humanos , Masculino , Feminino , Lactente , Pré-Escolar , Criança , Adolescente , Doença Crônica , Qualidade de Vida , Família , Inquéritos e Questionários , Reprodutibilidade dos Testes , Argentina
16.
Sci Data ; 10(1): 2, 2023 01 03.
Artigo em Inglês | MEDLINE | ID: mdl-36596812

RESUMO

Here we present the Familydemic Cross Country and Gender Dataset (FCCGD), which offers cross country and gender comparative data on work and family outcomes among parents of dependent children, before and during the COVID-19 pandemic. It covers six countries from two continents representing diverse welfare regimes as well as distinct policy reactions to the pandemic outbreak. The FCCGD was created using the first wave of a web-based international survey (Familydemic) carried out between June and September 2021, on large samples of parents (aged 20-59) living with at least one child under 12 in Canada, Germany, Italy, Poland, Sweden, and the US. While individual datasets are not available due to country-level restriction policies, the presented database allows for cross-country comparison of a wide range of employment outcomes and work arrangements, the division of diverse tasks of unpaid labour (housework and childcare) in couples, experiences with childcare and school closures due to the pandemic and subjective assessments of changes to work-life balance, career prospects and the financial situation of families (234 variables).


Assuntos
COVID-19 , Pandemias , Criança , Humanos , Cuidado da Criança , COVID-19/epidemiologia , Emprego , Inquéritos e Questionários , Família , Masculino , Feminino , Adulto
17.
Handb Clin Neurol ; 191: 81-105, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36599517

RESUMO

Dementia is the most common neurologic disease, affecting approximately 55 million people worldwide. Dementia is a terminal illness, although not always recognized as such. This chapter discusses the key issues in providing palliative care for people with living with dementia and their families. Common palliative care needs and symptoms are presented, including psychosocial, physical, emotional, and spiritual, and the need to actively anticipate and seek symptoms according to the dementia type and stage is emphasized. Families are hugely impacted by a dementia diagnosis, and throughout this chapter, they are considered in the unit of care, and also as a member of the care team. Multiple challenges particular to dementia palliative care are highlighted throughout, such as the lack of timely dementia diagnoses, difficulty with symptom prognostication, the person's inability to verbally express their symptoms and care preferences, and a low threshold for medication side effects. Finally, service models for dementia palliative care in community, residential, and acute hospital settings are discussed, along with the evidence for each. Overall, this chapter reinforces that the individual needs of the person living with dementia and their family must be considered to provide person-centered and comprehensive palliative care, enabling them to live well until death.


Assuntos
Demência , Assistência Terminal , Humanos , Cuidados Paliativos/psicologia , Família/psicologia , Qualidade de Vida/psicologia , Demência/terapia , Assistência Terminal/psicologia
18.
Artigo em Inglês | MEDLINE | ID: mdl-36613191

RESUMO

High-quality end-of-life communication between healthcare professionals (HCPs), patients and/or their family caregivers (FCs) improves quality of life and reduces non-beneficial care at the end of life. Nursing homes (NHs) are among the contexts at the forefront of these conversations. Having a solid theoretical basis for the role of end-of-life communication in NHs in transitioning to palliative-oriented care can offer indications for research, practice, education, and policy related to geropalliative care. This study aimed to develop a situation-specific theory of end-of-life communication in NHs by refining an existing theory. A four-step integrative approach was employed that included: (1) checking the assumptions for theorization; (2) exploring the phenomenon through multiple sources; (3) theorizing; and (4) reporting. All elements of the existing end-of-life communication theory in NHs were confirmed: end-of-life communication improved the understanding of FCs about their relatives' health conditions, shared decision-making, and reflections on the desired preferences of residents/FCs for care at the end of life. Furthermore, the family environment affected the burden of FCs in the decision-making process. Finally, time and resource constraints, regulations, visitation restrictions due to the COVID-19 pandemic, and social and cultural values influenced the quality and timing of communication. The study findings confirmed the impact of the political, historical, social, and cultural context on end-of-life communication, thus providing the basis for a situation-specific theory.


Assuntos
COVID-19 , Assistência Terminal , Humanos , Qualidade de Vida , Pandemias , Família , COVID-19/epidemiologia , Casas de Saúde , Comunicação
19.
BMC Med Ethics ; 24(1): 3, 2023 Jan 16.
Artigo em Inglês | MEDLINE | ID: mdl-36647039

RESUMO

BACKGROUND: The informed consent process in clinical trials has been extensively studied to inform the development processes which protect research participants and encourage their autonomy. However, ensuring a meaningful informed consent process is still of great concern in many research settings due to its complexity in practice and interwined socio-cultural factors. OBJECTIVES: This study explored the practices and meaning of the informed consent process in two clinial trials conducted by Oxford University Clinical Research Unit in collaboration with the Hospital for Tropical Diseases in Ho Chi Minh City, Vietnam. METHODS: We used multiple data collection methods including direct observervations, in-depth interviews with study physicians and trial participants, review of informed consent documents from 2009 to 2018, and participant observation with patients' family members. We recruited seven physicians and twenty-five trial participants into the study, of whom five physicians and thirteen trial participants completed in-depth interviews, and we held twenty-two direct observation sessions. RESULTS: We use the concept "fragmented understanding" to describe the nuances of understanding about the consent process and unpack underlying reasons for differing understandings. CONCLUSIONS: Our findings show how practices of informed consent and different understanding of the trial information are shaped by trial participants' characteristics and the socio-cultural context in which the trials take place.


Assuntos
Consentimento Livre e Esclarecido , Médicos , Humanos , Vietnã , Família
20.
BMC Health Serv Res ; 23(1): 43, 2023 Jan 17.
Artigo em Inglês | MEDLINE | ID: mdl-36650497

RESUMO

BACKGROUND: The population of Europe is ageing and becoming more ethnically diverse due to migration. Finding suitable long-term caring arrangements for older immigrants in Europe has been one of healthcare policymakers' concerns in the last decade. However, relatively few older people with an immigrant background live in long-term care facilities, and many prefer to be cared for by their family members. Little is known about immigrant family caregivers' experiences of caring for older family members and the support they need while providing care. This study aims to synthesize the qualitative literature exploring the experiences of individuals caring for older family members with immigrant backgrounds from Africa, Asia and South America living in Europe. METHODS: We searched the electronic databases Medline Ovid, Embase Ovid, PsycInfo Ovid, SocIndex EBSCOhost, CINAHL EBSCOhost, Scopus, Social Care Online, ASSIA ProQuest, and Google Scholar for original, peer reviewed research articles, published in English from 2011 to 2022. The seven-step interpretive methodology in meta-ethnography developed by Noblit and Hare (1988) was followed for qualitative synthesis. RESULTS: After assessing 4155 studies for eligibility criteria, 11 peer-reviewed articles were included in this review. The qualitative synthesis of these included articles resulted in four main themes: strong care norms for parents, the moral dilemma of continuing care, uneven care sharing, and the use of formal care services. CONCLUSIONS: Caregiving dynamics are changing, both in terms of motivations and approaches to caregiving. Furthermore, there are gender disparities in the distribution of caregiving duties, particularly with women carrying the more significant burden of care. The care burden is further exacerbated by the lack of culturally sensitive formal services complementing the care needs of the ageing immigrants and their family caregivers. Therefore, those searching for alternatives to informal care should be met with appropriate health and care services in terms of language, culture, religion, and lifestyle, delivered in a non-judgmental way.


Assuntos
Cuidadores , Emigrantes e Imigrantes , Feminino , Humanos , Idoso , Família , Antropologia Cultural , Europa (Continente) , Pesquisa Qualitativa
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA
...