Lack of awareness of systemic lupus erythematosus and its consequences in a cohort of moderate and severe patients in Spain: The LupusVoice study.

BACKGROUND AND OBJECTIVES: Systemic lupus erythematosus (SLE) is an autoimmune condition that can highly impact patients' quality of life (QoL). However, there is a lack of knowledge about SLE, affecting the general population and health care professionals (HCPs) alike. This lack of knowledge has negative implications for patients and the healthcare system, worsening prognosis, negatively impacting QoL, and increasing healthcare utilization. The aim of this paper is to draw attention, according to the perspective of the participants of this study, to the lack of awareness of SLE and its consequences in Spain, and to suggest improvements. PATIENTS AND METHODS: This qualitative, descriptive, observational, multicenter, and cross-sectional study included 40 patients with moderate or severe SLE, recruited during their routine visits in six university hospitals in Spain. The study also included 11 caregivers and 9 HCPs. All participants were individually interviewed. Data from the interviews were coded and analyzed thematically by two anthropologists following a phenomenological perspective. RESULTS: Our study identified a lack of disease awareness among primary care physicians, emergency medicine doctors, and other specialists treating SLE symptomatology. This led to diagnostic delays, which had a clinical and emotional impact on patients. Furthermore, symptom awareness was found to be context dependent. Differences in symptom awareness between HCPs and patients led to a mismatch between the severity evaluation made by doctors and patients. Some HCPs did not consider the limitations of the current severity evaluation of SLE, and therefore attributed symptoms potentially caused by SLE to the unfavorable socioeconomic conditions patients lived in. Finally, a lack of social awareness among friends, family members, and romantic partners led to lower social support, increased isolation, and negative physical and emotional impact for patients. Gender differences in the provision of support were identified. CONCLUSION: This study highlights the need to increase SLE awareness among patients, HCPs, and the broader public in order to improve patient QoL. Being aware of the clinical and emotional impact of such lack of awareness, as well as the role played by context on the patient experience of SLE, is a crucial step towards achieving this goal.

Respuesta emocional de pacientes cardiológicos en estado crítico durante la higiene en cuidados intensivos: estudio prospectivo y descriptivo / Emotional response of critically-ill cardiac patients during hygiene procedures in intensive care: a prospective and descriptive study / Resposta emocional de pacientes cardiológicos críticos durante a higiene em cuidados intensivos: um estudo prospectivo e descritivo

Objetivo: analizar la respuesta emocional de pacientes conscientes en estado crítico durante la higiene diaria en una unidad de cuidados intensivos cardiológicos y compararla en función de experiencias previas o no. Método: estudio prospectivo y descriptivo. Encuesta ad hoc de 30 ítems realizada a 148 pacientes y basada en la higiene del primer día. Se formulan preguntas sobre los sentimientos durante la higiene y aspectos positivos y negativos de la experiencia. Se compara a los pacientes en función de si se los había higienizado con anterioridad. Resultados: el 67,6% fueron hombres y la media de edad fue de 67±15 años. El 45,9% presentó conformismo, el 27% sintió vergüenza y el 86,3% agradeció que le hablaran durante la higiene. Al 33,1% de los pacientes nunca les habían realizado higiene en la cama, eran significativamente más jóvenes y solteros, y tenían menor sensación de limpieza. El 32% expresó que le gustaría que un familiar colaborase en la higiene. Conclusión: los pacientes no sienten que se invade su intimidad cuando se los higieniza y aprecian la comunicación con el personal sanitario durante estos cuidados. Los pacientes a quienes no les habían realizado higiene en la cama previamente son más jóvenes, sienten mayor vergüenza y les molestan más las interrupciones, siendo más conscientes de ellas.

Objective: to analyze the emotional response of critically-ill conscious patients during daily hygiene procedures in a Cardiology Intensive Care Unit and to compare it based on the existence of previous experiences or not. Method: a prospective and descriptive study. A 30-item ad hoc survey based on the first-day hygiene procedures was applied to 148 patients. Questions are asked about the feelings during the hygiene procedures and about positive and negative aspects of the experience. The patients are compared based on whether they had been already subjected to hygiene procedures or not. Results: 67.6% were men and their mean age was 67±15 years old; 45.9% proved to be satisfied, 27% felt embarrassment and 86.3% were grateful to the professionals for talking to them during the hygiene procedures. 33.1% of the patients had never been subjected to hygiene procedures in bed, were significantly younger and single, and presented a lower cleanliness sensation. 32% stated that they would like for a family member to collaborate in the hygiene procedures. Conclusion: the patients do not feel that their intimacy is invaded when they are subjected to hygiene procedures and appreciate communication with the health personnel while this care is provided. Those who had never been subjected to hygiene procedures in bed are younger, feel more embarrassed and are more disturbed by interruptions, in addition to being more aware of them.

Objetivo: analisar a resposta emocional de pacientes críticos conscientes durante a higiene diária em uma unidade de terapia intensiva cardíaca e compará-la considerando ou não as experiências prévias. Método: estudo prospectivo e descritivo. Foi aplicado questionário ad hoc de 30 itens a 148 pacientes, com base na higiene do primeiro dia. Foram feitas perguntas sobre sentimentos durante a higiene e aspectos positivos e negativos da experiência. Os pacientes foram comparados considerando o fato de terem sido higienizados anteriormente. Resultados: 67,6% eram homens e a idade média foi de 67±15 anos. 45,9% apresentavam conformismo, 27% se sentiram envergonhados e 86,3% estavam gratos por terem conversado com eles durante a higiene; 33,1% dos pacientes acamados nunca haviam recebido cuidados de higiene no leito, eram significativamente mais jovens e solteiros, e tinham um senso de limpeza mais baixo; 32% expressaram que gostariam que um membro da família ajudasse na higiene. Conclusão: os pacientes não se sentiram invadidos em sua intimidade quando receberam os cuidados de higiene e apreciaram a comunicação com o pessoal de saúde durante o procedimento. Os pacientes que não tinham recebido cuidados de higiene no leito anteriormente são mais jovens, sentem-se mais constrangidos e mais incomodados pelas interrupções, sendo mais conscientes delas.

Emotional response of critically-ill cardiac patients during hygiene procedures in intensive care: a prospective and descriptive study. / Respuesta emocional de pacientes cardiológicos en estado crítico durante la higiene en cuidados intensivos: estudio prospectivo y descriptivo.

OBJECTIVE: to analyze the emotional response of critically-ill conscious patients during daily hygiene procedures in a Cardiology Intensive Care Unit and to compare it based on the existence of previous experiences or not. METHOD: a prospective and descriptive study. A 30-item ad hoc survey based on the first-day hygiene procedures was applied to 148 patients. Questions are asked about the feelings during the hygiene procedures and about positive and negative aspects of the experience. The patients are compared based on whether they had been already subjected to hygiene procedures or not. RESULTS: 67.6% were men and their mean age was 67±15 years old; 45.9% proved to be satisfied, 27% felt embarrassment and 86.3% were grateful to the professionals for talking to them during the hygiene procedures. 33.1% of the patients had never been subjected to hygiene procedures in bed, were significantly younger and single, and presented a lower cleanliness sensation. 32% stated that they would like for a family member to collaborate in the hygiene procedures. CONCLUSION: the patients do not feel that their intimacy is invaded when they are subjected to hygiene procedures and appreciate communication with the health personnel while this care is provided. Those who had never been subjected to hygiene procedures in bed are younger, feel more embarrassed and are more disturbed by interruptions, in addition to being more aware of them.

Evolución de pacientes con COVID-19 en pronación en una UCI reconvertida durante la primera ola / Evolution of patients with COVID-19 in pronation in an ICU reconverted during the first wave

Objetivo: describir el perfil y la evolución de pacientes con COVID-19 que recibieron cambio postural a prono como parte del tratamiento de síndrome de distrés respiratorio agudo (SDRA) en la UCI cardiovascular del Hospital Clínic de Barcelona reconvertida en UCI COVID en la primera ola de la pandemia. Metodología: estudio transversal tipo serie de casos realizado entre marzo y mayo de 2020. Se incluyeron adultos que hubiesen sido colocados en prono como parte del tratamiento del SDRA. Mediante revisión de historias clínicas se recogieron las variables: sexo, edad, antecedentes patológicos, ventilación y sedación, escala SAPS-II, tiempo de estancia, evolución de PAFI (relación entre la presión arterial de oxígeno y la fracción inspirada de oxígeno), complicaciones y mortalidad. Se realizó estadística descriptiva. Resultados: ingresaron 44 pacientes, de ellos el 30% necesitó decúbito prono. Se llevaron a cabo 21 cambios posturales a 13 pacientes, con un tiempo mediano de 24 horas. El 69% fue hombre, con edad media de 67,8 años y un 69% tenía cardiopatía previa. El tiempo medio con ventilación mecánica fue de 23,9 días, la estancia media hospitalaria 45,1 días. La PAFI mejoró tras la posición prono en todos los pacientes (inicial = 132,5; durante prono = 232,6; final = 168,6). La mortalidad de los pacientes fue del 30,8% durante el ingreso en UCI. Las complicaciones más frecuentes fueron hemodinámicas (n= 8). Conclusión: el perfil de pacientes eran hombres mayores de 65 años con cardiopatía previa. La oxigenación tuvo una evolución positiva. La mortalidad no se distinguió de otros contextos y fue inferior a la estimada por la escala SAPSS-II. El porcentaje de complicaciones fue bajo.(AU)

Objective: to describe the profile and evolution of patients with COVID-19 after postural change to pronation as part of their treatment for acute respiratory distress symptom (ARDS) at the Cardiovascular ICU of the Hospital Clínic in Barcelona which was reconverted to COVID ICU during the first wave of the pandemic. Methodology: a cross sectional case series study, conducted between March and May 2020. The study included adults who had been positioned in pronation as part of their ARDS treatment. The following variables were collected through clinical record review: gender, age, medical history, ventilation and sedation, SAPS-II score, time of hospitalization, PAFI evolution (the ratio of arterial oxygen pressure to fractional inspired oxygen), complications and mortality. Descriptive statistics were used. Results: in total, 44 patients were admitted, and 30% of them required pronation; 21 position changes were made in 13 patients, with 24 hours as median time. Of these patients, 69% were male, with 67.8 years as mean age, and 69% had a previous cardiopathy. The mean time with mechanical ventilation was 23.9 days, and the mean hospital stay was 45.1 days. There was an improvement in PAFI after pronation in all patients (initial = 132.5; during pronation = 232.6; final = 168.6). There was a 30.8% patient mortality during hospitalization at ICU. The most frequent complications were hemodynamic (n= 8). Conclusion: the patient profile was a >65-year-old male with previous cardiopathy. There was a positive evolution in oxygenation. Mortality was not differentiated from other settings and it was lower than that estimated through the SAPSS-II score. There was a low proportion of complications.(AU)

Clinical Debriefing in Cardiology Teams: A National Survey in Spain.

BACKGROUND: Clinical debriefing (CD) improves patient safety and builds team resilience. PURPOSE: We describe the current use of CD by multiprofessional Spanish cardiology team members. METHODS: A self-administered survey exploring 31 items was disseminated online in October 2020. A comparison was made between respondents that who experience in CD with inexperienced respondents. Inferential analysis was done using Pearson's χ 2 test. RESULTS: Out of 167 valid responses, 45.5% had been completed by cardiology nurses. One-third of the respondents had experience in CD. Most common situations preceding CD were those with negative outcomes (81.8%). Time constraint was the most commonly reported barrier (76.3%); however, it was significantly less than the expectation of inexperienced respondents (92%, P < .01). Overall, only 28.2% reported self-confidence in their skills to lead a CD. CONCLUSIONS: There is a necessity in Spanish cardiology teams to receive training in CD and embed it in their daily practice.

Lived Experiences of Hospitalized COVID-19 Patients: A Qualitative Study.

The COVID-19 pandemic has resulted in many hospitalized patients and deaths worldwide. Coronavirus patients were isolated from their relatives and visits were banned to prevent contagion. This has brought about a significant change in deeply rooted care habits in Mediterranean and Latin American countries where the family normally accompanies vulnerable hospitalized patients. The aim of this qualitative study was to examine the hospitalization experience of COVID-19 patients and their family members. A phenomenological qualitative approach was used. Data collection included inductive, in-depth interviews with 11 COVID-19 hospitalized patients. The mean age of patients was 55.4 years and 45% were female. Nearly 50% required Intensive Care Unit (ICU) admission. Ten meaningful statements were identified and grouped in three themes: Positive and negative aspects of the care provided, the patient's perspective, and perception of the experience of the disease. In conclusion, COVID-19 patients, aware of the severity of the pandemic, were very adaptable to the situation and had full confidence in health professionals. Patient isolation was perceived as necessary. Technology has helped to maintain communication between patients and relatives.

Experiences of nursing students as healthcare aid during the COVID-19 pandemic in Spain: A phemonenological research study.

BACKGROUND: The coronavirus disease (COVID-19) pandemic has caused a worldwide health and social crisis directly impacting the healthcare system. Hospitals had to rearrange its structure to meet clinical needs. Spain has been experiencing a shortage of working nurses. Student nurses in their last year at university were employed to help the National Health System respond to the COVID-19 crisis. AIM: The aim of this study was to explore and understand the experience of nursing students' roles as healthcare aid in responding to the COVID-19 crisis. METHODS: A qualitative phenomenology design was used to explore undergraduate nursing students' perceptions of their experiences as HAs during the COVID-19 outbreak. Open face-to-face interviews were conducted to nursing students (n = 10) in May 2020. Data was analyzed using the hermeneutic interpretative approach. RESULTS: All participants were women aged between 21 and 25 years. Seven main themes emerged: learning, ambivalent emotions and adaptation were classified at a personal level; teamwork, patient communication, and unclear care processes were categorized under hospital structure; and coping mechanisms were part of external factors. CONCLUSIONS: Orientation, follow-up, and emotional support in crisis situations are key to unexperienced healthcare workers overcoming stressful emotions. Previous academic education and training may help novice future nurses feel more confident about their tasks and responsibilities as well as improve patient outcomes, resource management, and staff safety.

Canulación central de membrana de oxigenación extracorpórea en parada cardiorrespiratoria en postoperados de cirugía cardiaca / Central Cannulation in Extracorporeal Membrane Oxygenation for cardiorespiratory arrest in patients who have undergone cardiac surgery

En los pacientes postoperados de cirugía cardiaca, la mayoría de las paradas cardiorrespiratorias (PCR) requieren una reapertura esternal emergente. Cuando esta situación no revierte, la colocación de un dispositivo de membrana de oxigenación extracorpórea (ECMO) se ha definido como una terapia eficaz para mejorar la supervivencia y disminuir los daños neurológicos. La canulación de ECMO central en estos pacientes supone una opción rápida y segura, aunque es necesaria la formación continua y la realización de guías de procedimiento para que todo el personal pueda actuar de manera rápida y eficaz. El desarrollo de este protocolo tiene como objetivos: a) Estandarizar la secuencia de intervenciones en la colocación de ECMO central en PCR. b) Establecer y definir los roles de cada uno de los profesionales implicados durante el proceso. c) Describir las posibles complicaciones que pueden aparecer para poder prevenir su aparición o minimizar sus consecuencias. d) Identificar los diagnósticos de Enfermería y planificar los cuidados adecuados

In patients who have undergone cardiac surgery, most cardiorespiratory arrests (CRAs) require emergent sternal reopening. When this situation is not reversed, the use of extracorporeal membrane oxygenation (ECMO) has been defined as an effective therapy in order to improve survival and reduce neurological damage. Central ECMO cannulation in these patients represents a fast and safe option, though continuous training is required, as well as preparing procedure guidelines so that all the staff can act in a fast and effective manner. The objectives for developing this protocol are: a) To standardize the sequence of interventions in the placement of central ECMO at CRA; b) To determine and define the roles of each professional involved during the process; c) To describe any potential complications that might appear, in order to prevent them or minimize their consequences; d) To identify nursing diagnoses and determine the adequate plan of care