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Rev Infirm ; 69(257): 19, 2020 Jan.
Artículo en Francés | MEDLINE | ID: mdl-32146957


Cystic fibrosis, a rare, hereditary and chronic disease, affects the psychic functioning of children and their families. Since it is incurable, constant adjustments are essential to make sense of the inevitable evolution of the disease. The psychologists support the families and the patients so that all live as well as possible with cystic fibrosis.

Fibrosis Quística/psicología , Familia/psicología , Relaciones Profesional-Familia , Apoyo Social , Fibrosis Quística/diagnóstico , Humanos
N Engl J Med ; 382(9): 795-797, 2020 Feb 27.
Artículo en Inglés | MEDLINE | ID: mdl-32101662
Hu Li Za Zhi ; 67(1): 106-112, 2020 Feb.
Artículo en Chino | MEDLINE | ID: mdl-31960402


Preterm infants face increased rates of mortality and developmental complications, which are a burden on children's parents (and caregivers), who suffer from exhaustion and situational uncertainty. This case focused on an extremely-low-birth-weight (908 gm) premature infant with initial unstable vital signs complicated by a grade 4 intraventricular hemorrhage (IVH) that led to partial brain atrophy and enlarged brain ventricles. A poor neurological outcome was expected due to the high risk of cerebral palsy and impaired cognitive abilities. Long-term healthcare for this critical infant was causing tremendous physical, emotional, and financial strains on the family. The parents suffered from worries over the poor prognosis, resulting in stress, sleep disorders, and relationship difficulties with the healthcare professionals. Considering the poor prognosis of the infant, the parents faced a medical dilemma between choosing aggressive treatment and withdrawal of treatment, which led to stress and sleep disorders. Differences between the parents and health professionals regarding disease severity perception and treatment opinions further strained their mutual relationship. To ameliorate this issue, the author implemented family-centered care (the FOCUS family intervention) to help the patient and his family. This intervention is designed to increase family involvement, foster an optimistic attitude and effective stress coping techniques, and reduce uncertainty and negative emotions. For the patient, we provided symptom-relief management to improve abnormal muscle tone and development delay. Our intervention ameliorated the negative emotions, insomnia symptoms, and imbalanced family relationships and improved the life quality of the caregivers. Furthermore, the intervention enhanced the patient's autoregulatory ability, and both physical and neurological development. This case study is expected to provide experience in critical care for premature infants with a poor prognosis and their family using a FOCUS family intervention as well as to improve the quality of healthcare delivery in intensive clinical settings.

Hemorragia Cerebral/terapia , Familia/psicología , Enfermedades del Prematuro/terapia , Relaciones Profesional-Familia , Hemorragia Cerebral/patología , Humanos , Recien Nacido con Peso al Nacer Extremadamente Bajo , Recién Nacido , Recien Nacido Prematuro , Enfermedades del Prematuro/patología
Niger J Clin Pract ; 23(1): 103-109, 2020 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-31929215


Background: Psychological violence is the most common form of workplace violence (WPV) that can affect job performance and health of the workers. Aims: This study sought to determine the prevalence of psychological WPV among employees working in a tertiary health institution in a South-eastern state of Nigeria. Methods: A descriptive cross-sectional study done in 2018 among healthcare workers at the University of Nigeria Teaching Hospital Enugu State using a pretested self-administered questionnaire adapted from Workplace Violence in the Health Sector Country Case Study Questionnaire. Proportionate sampling method was used to select 412 respondents. Data were analyzed with SPSS version 23 using Chi-square test of significance and P value set at 0.05. Results: Prevalence of psychological violence among the participants was 49.7%. Verbal abuse was the most form of psychological violence experienced 168 (40.8%) followed by bullying 29 (7.0%) while sexual abuse was reported by 8 (1.9%). Majority 114 (55.6%) of the perpetrators of the psychological violence were patient's relative, whereas 48 (23.4%) were staff members. In response to the violence, 58 (28.6%) of the healthcare workers took no action, while only 2 (1%) completed incident/accident form. Bullying was statistically significantly higher in healthcare workers who have spent less than 10 years (χ2 = 3.978 P = 0.046). There was a significant association between verbal abuse and frequent interaction with patients (χ2 = 4.757, P = 0.029). Conclusion: This study has shown that the prevalence of psychological WPV was high among healthcare workers in University of Nigeria Teaching Hospital, Enugu State. Therefore, there is need for the hospital management to develop policy interventions specific to psychological WPV.

Agresión , Acoso Escolar/estadística & datos numéricos , Personal de Salud/psicología , Acoso Sexual/estadística & datos numéricos , Violencia Laboral/estadística & datos numéricos , Adulto , Acoso Escolar/psicología , Estudios Transversales , Femenino , Hospitales de Enseñanza , Humanos , Masculino , Persona de Mediana Edad , Nigeria/epidemiología , Prevalencia , Relaciones Profesional-Familia , Encuestas y Cuestionarios , Violencia Laboral/psicología
Urologe A ; 59(1): 87-98, 2020 Jan.
Artículo en Alemán | MEDLINE | ID: mdl-31728563


The juridification of medicine affects all disciplines, including urology. Therefore, in this discipline it can well happen that patients not only feel wrongly treated or complain that a treatment was not performed lege artis but also demand compensation or even bring criminal charges. From the patient point of view, the doctor is often more likely to blame for a complication that has arisen or for a hoped for but failed treatment success, than that it is accepted that a complication is typical for the intervention, which, despite the greatest medical care, unfortunately can become reality and is a fateful course. Insurance against claims for damages can be taken out. Not to be underestimated, however, is the personal burden of the accusations with which doctors are confronted by patients, relatives, expert witnesses and courts and against which one must defend oneself. This can mean additional work in addition to the normal medical workload. Therefore, the legal pitfalls in urology should be known.

Mala Praxis/legislación & jurisprudencia , Urología/legislación & jurisprudencia , Compensación y Reparación/legislación & jurisprudencia , Testimonio de Experto/legislación & jurisprudencia , Humanos , Seguro de Responsabilidad Civil/economía , Seguro de Responsabilidad Civil/legislación & jurisprudencia , Responsabilidad Legal/economía , Mala Praxis/economía , Aceptación de la Atención de Salud , Relaciones Médico-Paciente , Relaciones Profesional-Familia , Urología/economía
Rev. Pesqui. (Univ. Fed. Estado Rio J., Online) ; 12: 189-195, jan.-dez. 2020. ilus
Artículo en Inglés, Portugués | LILACS, BDENF - Enfermería | ID: biblio-1047755


Objetivo: discutir sobre a reação familiar frente ao processo de comunicação de morte encefálica e a possível doação de órgãos. Método: revisão integrativa da literatura, com busca dos artigos nas bases de dados: SciELO, BEDENF, LILACS, MEDLINE publicados entre os anos de 2008 a 2017. Selecionou-se para essa pesquisa, 14 publicações conforme os critérios de inclusão e exclusão. Resultados: o elemento principal para que o processo de doação seja satisfatório é a família. E que estes apresentam reações diversas ao receber a informação de morte encefálica e a possível doação de órgão. Dentre esses vários fatores estão a local onde a comunicação é realizada e o desconhecimento dos familiares sobre a opinião do doador. Conclusão: ao receberem o diagnóstico de morte encefálica, os familiares apresentam manifestações como tristeza, choro e revolta. O desconhecimento esse assunto, leva os familiares a uma série de questionamentos e uma possível recusa na doação

Objective: discuss about the family reaction in front of the communication process of brain death and possible organ donation. Method: integrative review of literature, with search of articles in databases: SciELO, BEDENF, LILACS, MEDLINE published between the years of 2008 to 2017. We selected for this research, 14 publications according to the criteria of inclusion and exclusion. Results: the main element for which the donation process is satisfactory is the family. And they have different reactions to receive the information of brain death and organ donation possible. Among these various factors are the place where the communication is performed and the lack of family about the opinion of the donor. Conclusion: to receive the diagnosis of brain death, the rooms feature manifestations such as sadness, crying and revolt. The lack of this subject, brings the family to a series of questions and a possible refusal in the donation

Objetivo: discutir acerca de la reacción de la familia frente al proceso de comunicación de muerte cerebral y posible la donación de órganos. Método: revisión de la literatura integradora, con búsqueda de artículos en bases de datos: BEDENF, SciELO, LILACS, MEDLINE, publicados entre los años de 2008 a 2017. Hemos seleccionado para esta investigación, 14 publicaçoes según los criterios de inclusión y exclusión. Resultados: el principal elemento para que el proceso de donación es satisfactoria es la familia. Y tienen diferentes reacciones para recibir la información de la muerte cerebral y la donación de órganos es posible. Entre estos diversos factores son el lugar donde se realiza la comunicación y de la falta de familia acerca de la opinión de los donantes. Conclusión: para recibir el diagnóstico de muerte cerebral, las habitaciones cuentan con manifestaciones como la tristeza, el llanto y la revuelta. La falta de este tema, trae a la familia a una serie de preguntas y un posible rechazo de la donación

Humanos , Masculino , Femenino , Relaciones Profesional-Familia/ética , Obtención de Tejidos y Órganos , Muerte Encefálica , Familia/psicología
Artículo en Inglés, Portugués | LILACS, BDENF - Enfermería | ID: biblio-1048327


Objetivo: descrever ações executadas pelo acompanhante junto à parturiente, conforme informações recebidas no pré-natal. Método: estudo qualitativo, descritivo, exploratório, com 21 acompanhantes, com o uso de um questionário semiestruturado. No processamento de análise dos dados, foi utilizado o software Iramuteq. Resultados: emergiram duas classes: 1. A informação no pré-natal sobre o direito do acompanhante e 2. A participação do acompanhante junto à parturiente e as ações executadas. Conclusão: a informação referente ao direito do acompanhante e ações a serem desenvolvidas por eles no processo de parto foram poucas ou nenhuma durante o pré-natal e as ações realizadas por eles foram provenientes de conhecimento adquirido por meio de busca individual ou recebido no momento da internação

Objective: to describe actions taken by the companion of the parturient, according the information received in prenatal care. Method: qualitative, descriptive, exploratory study with 21 companions, with the use of a semi-structured questionnaire. In the data analysis processing, Iramuteq software was used. Results: the two categories that emerged: 1. The information in the prenatal about your rights to the parturient companion 2. The participation of the parturient companion and the actions taken. Conclusion: observed that the information concerning the right of the companion and actions to be undertaken by them on labor process, were little or no during prenatal care, and the actions performed by them came from knowledge acquired through individual search or received at the time of hospitalization

Objetivo: describir acciones ejecutadas por el acompañante junto a la parturienta, conforme informaciones recibidas en el prenatal. Método: estudio cualitativo, descriptivo, exploratorio, con 21 acompañantes, con el uso de un cuestionario semiestructurado. En el procesamiento de análisis de los datos, se utilizó el software Iramuteq. Resultados: emergieron dos clases: 1. La información en el prenatal sobre el derecho del acompañante y 2. La participación del acompañante junto a la parturienta y las acciones ejecutadas. Conclusión: la información referente al derecho del acompañante y acciones a ser desarrolladas por ellos en el proceso de parto y parto fueron pocas o ninguna durante el prenatal y las acciones realizadas por ellos, fueron provenientes de conocimiento adquiridos por medio de búsqueda individual o recibidas en el momento de la internación

Humanos , Masculino , Femenino , Embarazo , Adulto , Persona de Mediana Edad , Atención Prenatal , Parto Humanizado , Chaperones Médicos/tendencias , Relaciones Profesional-Familia , Relaciones Profesional-Paciente , Trabajo de Parto , Parto , Investigación Cualitativa , Humanización de la Atención , Acogimiento
Artículo en Inglés, Portugués | LILACS, BDENF - Enfermería | ID: biblio-1048054


Objetivo: compreender a contribuição da consulta de enfermagem para a educação em saúde dos familiares de crianças em tratamento quimioterápico ambulatorial. Método: pesquisa de campo de abordagem qualitativa, realizada no interior do estado de São Paulo com 15 famílias atendidas na consulta de enfermagem, por meio de entrevista semiestruturada. Os dados foram analisados com a técnica de análise de conteúdo. Resultados: identificou-se uma categoria temática central "A consulta de enfermagem como ferramenta para o empoderamento dos pais", subsidiada pelos seguintes núcleos de sentido: fundamental, apoio, acolhimento, relação de confiança e vínculo, aprendizado e segurança. Conclusão: a consulta de enfermagem foi revelada como um espaço que proporciona o empoderamento da família por meio da aquisição do conhecimento sobre o diagnóstico, o tratamento e a forma de lidar com a criança oncológica, o que possibilita aos pais maior segurança para cuidarem do filho

Objective: to understand the contribution of the nursing consultation to the health education of the relatives of children undergoing outpatient chemotherapy. Method: a qualitative field survey was carried out at in a town in the State of Sao Paulo with 15 families seen at the nursing consultation. Data collection was performed through a semi-structured interview and analyzed through content analysis technique. Results: a central thematic category was identified: "The nursing consultation as a tool for empowering the parents", supported by the nuclei of meaning: fundamental, support, reception, trust and bonding, learning and confidence. Conclusion: the nursing consultation was revealed as a moment for providing empowerment for the child's family through knowledge acquisition regarding the diagnosis, treatment and way of coping with the oncological child, which provides the parents with greater confidence to care for their child

Objetivo: comprender la contribución de la consulta de enfermería para la educación en salud de familiares de niños en tratamiento ambulatorio de quimioterapia. Método: estudio de campo de enfoque cualitativo, realizado en el interior de São Paulo, con 15 familias atendidas en consulta de enfermería, por medio de entrevista semiestructurada. Los datos fueron analizados con la técnica de análisis de contenido. Resultados: se identificó una categoría temática central "La consulta de enfermería como herramienta para empoderamiento de los padres", auxiliada por los siguientes núcleos de sentido: fundamental, apoyo, acogida, relación de confianza y vínculo, aprendizaje y seguridad. Conclusión: la consulta de enfermería fue revelada como un espacio que proporciona el empoderamiento de la familia por medio de adquisición de conocimiento sobre el diagnóstico, el tratamiento y la forma de tratar con el niño oncológico, lo que les propicia a los padres mayor seguridad para cuidar del hijo

Humanos , Masculino , Niño , Adulto , Padres/educación , Enfermería de Consulta , Oncología Médica/educación , Relaciones Profesional-Familia , Familia , Salud del Niño , Investigación Cualitativa , Atención Ambulatoria
World Neurosurg ; 133: 457-465, 2020 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-31881580


Clinical neurosurgery is a complex specialty with multiple participants, including a variety of providers, patients, family members, and administrators, who interact in complex fashions. Modern-day patient care requires near-constant team communication of vital, detailed clinical information; any breakdown in this process can result in patient harm. Medical communication practices with patients impact mutual rapport as well as the overall physician-patient relationship. Enhanced relationship-centered communication techniques have been shown to improve patient compliance and may positively influence malpractice litigation rates. Neurosurgeons frequently interact with other health care providers and members of the hospital administration on matters relating to billing, compliance, and quality. Communication among the stakeholders is complicated, however, by the fact that the participants may be speaking a variety of different, mutually unintelligible "languages." We discuss the details of the various types of information exchanges in neurosurgery, the key players involved, and the vulnerabilities to breakdowns in the system. In addition, we review the multifaceted, systems-level issues in neurosurgical communication and related weaknesses.

Comunicación , Neurocirugia , Grupo de Atención al Paciente , Relaciones Médico-Paciente , Relaciones Profesional-Familia , Humanos , Neurocirujanos , Atención Dirigida al Paciente
J Clin Nurs ; 29(1-2): 195-207, 2020 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-31610045


AIMS AND OBJECTIVES: To explore the experiences of the families of young adults with intellectual disabilities at the point of transition from child to adult health services. BACKGROUND: The population of people with intellectual disabilities is changing rapidly, with young people with increasingly complex needs surviving into adulthood and requiring transition from child to adult health services. DESIGN: An interpretative qualitative design. METHODS: Semi-structured interviews were held with ten family carers of young adults with intellectual disabilities and complex care needs, who were in the process of or had recently completed a transition from child to adult health services in Scotland. Data were analysed using thematic analysis. The COREQ checklist was used. RESULTS: Transition emerged as a highly emotional and challenging period for family carers. Their experiences were captured in five main themes: "a deep sense of loss," "an overwhelming process," "parents making transitions happen," "a shock to the adult healthcare system" and "the unbearable pressure." Nurses were often seen as instrumental to counteracting some of these challenges. CONCLUSIONS: There is an urgent need to respond to the challenges experienced by carers at the point of transition and beyond, by ensuring early and coordinated planning, effective information sharing and communication and clear transition processes and guidelines. A person-centred and family-centred approach is required to minimise negative impact on the health and well-being of the young adult with intellectual disabilities and their carers. RELEVANCE TO CLINICAL PRACTICE: Registered nurses have a key role in providing information and support, along with coordinating care at the time of transition from child to adult health services for young adults with complex intellectual disabilities. It is vital that their input is person-centred and responds effectively to the expert knowledge of family carers, while at the same time ensuring their needs for information and support are also addressed.

Cuidadores/psicología , Familia/psicología , Discapacidad Intelectual/enfermería , Transición a la Atención de Adultos/organización & administración , Adolescente , Adulto , Femenino , Humanos , Discapacidad Intelectual/psicología , Masculino , Persona de Mediana Edad , Relaciones Profesional-Familia , Investigación Cualitativa , Escocia , Adulto Joven
J Clin Ethics ; 30(4): 347-355, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31851626


Most professional guidelines advocate family presence during resuscitation (FPDR). Many clinicians, however, are still reluctant to implement this recommendation. In this article I present the most comprehensive case for FPDR to date. I review the little that has been written about the ethics of FPDR, as well as the available empirical evidence. More importantly, I present and defend three arguments for FPDR: adherence to professional guidelines, benefit to patients and relatives, and patients' autonomy. I conclude with suggestions for future research.

Reanimación Cardiopulmonar/ética , Cuidados Críticos/ética , Familia , Relaciones Profesional-Familia/ética , Actitud del Personal de Salud , Reanimación Cardiopulmonar/psicología , Cuidados Críticos/psicología , Familia/psicología , Humanos , Guías de Práctica Clínica como Asunto
J Clin Ethics ; 30(4): 376-383, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31851628


An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and evidence-based care with cultural humility when providing culturally responsive family-centered culture care. Each person's worldview is unique as influenced by culture, language, and religion, among other factors. The Nursing Team sought to understand this family's collective Indian Hindu worldview and end-of-life beliefs, values, and practices, in view of the unique aspects of the situation while the team integrated evidence-based strategies to provide family-centered culture care. Parental care choices conflicted with those of the Nursing Team, and some nurses experienced moral distress and cultural dissonance when negotiating their deeply held cultural and religious views to advocate for the family. The inability to reconcile and integrate a stressful or traumatic experience impacts nurses' well-being and contributes to compassion fatigue. Nurses need to be intentional in accessing interventions that promote coping and healing and moral resilience. Reflection and cultural humility, assessment, and knowledge in context, increase evidence-based culture care and positive outcomes. U.S. society's views on ethical behavior continue to evolve, and some may argue that the law should place more limits on parents' right to choose or to refuse treatment for their infants and children. Moral distress can lead to moral resilience and satisfaction of compassion when nurses provide family-centered culture care with cultural responsiveness and integrate values-based practice with evidence-based care, and aim to first do no harm.

Enfermería de la Familia/ética , Principios Morales , Personal de Enfermería en Hospital/psicología , Relaciones Profesional-Familia/ética , Religión , Estrés Psicológico , Negativa del Paciente al Tratamiento/ética , Actitud Frente a la Muerte/etnología , Niño , Cultura , Empatía , Hinduismo , Humanos , Lactante , Recién Nacido
West J Emerg Med ; 20(6): 893-902, 2019 Oct 14.
Artículo en Inglés | MEDLINE | ID: mdl-31738716


INTRODUCTION: Breaking bad news (BBN) in the emergency department (ED) represents a challenging and stressful situation for physicians. Many medical students and residents feel stressed and uncomfortable with such situations because of insufficient training. Our randomized controlled study aimed to assess the efficacy of a four-hour BBN simulation-based training on perceived self-efficacy, the BBN process, and communication skills. METHODS: Medical students and residents were randomized into a 160-hour ED clinical rotation without a formal BBN curriculum (control group [CG], n = 31) or a 156-hour ED clinical rotation and a four-hour BBN simulation-based training (training group [TG], n = 37). Both groups were assessed twice: once at the beginning of the rotation (pre-test) and again four weeks later. Assessments included a BBN evaluation via a simulation with two actors playing family members and the completion of a questionnaire on self-efficacy. Two blinded raters assessed the BBN process with the SPIKES (a delivery protocol for delivering bad news) competence form and communication skills with the modified BBN Assessment Schedule. RESULTS: Group-by-time effects adjusted by study year revealed a significant improvement in TG as compared with CG on self-efficacy (P < 0.001), the BBN process (P < 0.001), and communication skills (P < 0.001). TG showed a significant gain regarding the BBN process (+33.3%, P < 0.001). After the training, students with limited clinical experience prior to the rotation showed BBN performance skills equal to that of students in the CG who had greater clinical experience. CONCLUSION: A short BBN simulation-based training can be added to standard clinical rotations. It has the potential to significantly improve self-efficacy, the BBN process, and communication skills.

Educación de Pregrado en Medicina/métodos , Medicina de Emergencia/educación , Servicio de Urgencia en Hospital , Internado y Residencia/métodos , Desempeño de Papel , Entrenamiento Simulado/métodos , Revelación de la Verdad , Adulto , Comunicación , Curriculum , Femenino , Humanos , Masculino , Relaciones Profesional-Familia , Autoeficacia , Método Simple Ciego
Br J Nurs ; 28(21): 1380-1386, 2019 Nov 28.
Artículo en Inglés | MEDLINE | ID: mdl-31778332


BACKGROUND: young-onset dementia (under age 65) varies in many respects to typical aged dementia. Health professionals are centrally involved in supporting individuals and families to cope with the unique challenges that young-onset dementia (YOD) brings. AIMS: this study aimed to explore professionals' perceptions of the key challenges faced by people living with YOD and their families, and how they provide support to this group. METHODS: qualitative interviews were conducted with nine health professionals from a range of health and social care contexts. Data were analysed using interpretative phenomenological analysis. FINDINGS: interviewees reported significant challenges in trying to enact support for people with YOD, and families. Particular challenges relate to delays in accessing timely diagnosis, and difficulty in accessing relevant, age-appropriate supports. Interviewees experienced ethical tensions working in this area; interviewees were keen to enact support for the person following diagnosis, but felt constrained by service options that were not relevant or readily accessible to the person, and in some instances, traditional dementia services added to, rather than lessened the stress experienced by those involved. CONCLUSION: dementia and health services should be cognisant of the unique challenges of YOD, and models of service provision should aim to respond accordingly. Nurses and other health professionals should be afforded the necessary structures to support people living with YOD. This relates to dedicated YOD models of care, specifically timely diagnosis, post-diagnosis support and community services that enhance personhood and resilience.

Actitud del Personal de Salud , Demencia/terapia , Ética Médica , Personal de Salud/psicología , Accesibilidad a los Servicios de Salud , Necesidades y Demandas de Servicios de Salud , Adaptación Psicológica , Edad de Inicio , Demencia/psicología , Familia/psicología , Humanos , Persona de Mediana Edad , Relaciones Profesional-Familia , Relaciones Profesional-Paciente , Investigación Cualitativa , Apoyo Social