The impact of developmental and epileptic encephalopathies on families: a qualitative study.

Developmental and epileptic encephalopathies (DEEs) cause disability and dependence affecting both children and the family. The aim of the study was to describe the perspective of parents of children with DEEs regarding the impact of the disease on the family. We carried out a qualitative study based on the interpretivist paradigm. Twenty-one participants were selected using purposive sampling. Parents of children with DEEs of SCN1A, KCNQ2, CDKL5, PCDH19, and GNAO1 variants were included. In-depth interviews and researcher notes were used for data collection. A thematic analysis was performed on the data. Three themes were identified in the results: (a) Assuming conflicts and changes within the couple, causing them to distance themselves, reducing their time and intimacy and leading them to reconsider having more children; (b) impact of the disorder on siblings and grandparents, where siblings perceived DEE as a burden in their lives, felt neglected, and needed to grow and mature alone; conversely, the grandparents suffered for their grandchildren and the parents, in addition to perceiving that their health worsened, and (c) reconciling the care of the child with family life and work; this led the parents to share tasks, abandon or reduce working hours and ask for help.Conclusions: Caring for a child with DEE can result in neglect of social, psychological, emotional, recreational, educational, or occupational needs and obligations that ultimately impact all family members. What is Known: • Children with DEE may develop seizures and experience developmental and cognitive problems. • Caring for a child with DEE has a social and psychological impact on the entire family.

Experience of Diagnosis and Initiation of Renal Replacement Therapy in Women with Chronic Kidney Disease.

Chronic kidney disease (CKD) has considerable effects on the quality of life of female patients. Receiving the diagnosis and beginning renal replacement therapy (RRT) has a great personal impact on patients. The purpose of this study was to describe the experience of female patients with CKD at an ambulatory dialysis unit regarding diagnosis, life changes, and initiation of RRT. A qualitative exploratory study was conducted based on a social contructivism framework. Participants were recruited using purposeful sampling. In total, 18 women who received treatment for CKD with RRT were included. The women were attending the Ambulatory Dialysis Unit at a hospital belonging to the public health system of Madrid (Spain). Unstructured and semi-structured in-depth interviews, researchers' field notes, and women's personal letters were used. A systematic text condensation analysis was performed. The criteria used to control trustworthiness were credibility, transferability, dependability, and confirmability. Two themes emerged from the data: (a) A turning point in their lives, and (b) The emotional journey of beginning RRT. The diagnosis of CKD and the beginning of treatment implies changing routines and adapting to a new life with CKD. The first dialysis and puncture of the arteriovenous fistula is a major experience. Support from other CKD patients with more experience is perceived as a necessity and a tool to share their experiences and resolve doubts among peers. The diagnosis and initiation of RRT leads to numerous changes in the lives of women with CKD, which may influence the acceptance of treatment.

Impact of the Pandemic on Dementia Care and Caregivers: A Qualitative Study.

Physical distancing measures to limit contagion in the COVID-19 pandemic made it difficult to care for older persons with dementia. Non-essential home visits were prevented and family caregivers took over most of their care. The aim of our study was to describe the lived experience of peoples living with dementia caregivers during the pandemic regarding the care provided and the person cared for. A qualitative phenomenological design was used. Participants were recruited using purposeful sampling. Informants were selected from primary healthcare centers, day centers, and a community mental health unit. The study participants comprised 21 caregivers. Semi-structured in-depth interviews by telephone were used, and field notes were collected from the researchers. A thematic analysis was conducted. The criteria used to control trustworthiness were credibility, transferability, dependability, and confirmability. Three main themes and six related sub-themes were identified: (1) care for the person with dementia during the pandemic, including lockdown, associated with difficulties in coping with restrictions, deterioration in health, and the impact of the closure of health and social resources; (2) health and social care provided to people with dementia after the disruptions and the care received from primary care prior to hospital or residential admission; and (3) the caregiver's perspective on the effects of the psycho-emotional impact, and coping strategies adopted in caring. Interventions for people with dementia should be planned in order to prevent the worsening of their health and cognitive status, while also developing programs to prevent stress and alleviate caregiver burden in case of health crises.

La experiencia de realizar una investigación cualitativa con mujeres con enfermedad renal crónica / The experience of conducting qualitative research with women with chronic kidney disease

La investigación es la plataforma para que la enfermería pueda contribuir a la calidad y gestión en el cuidado de los pacientes. La enfermería se hará visible a los ojos de los propios profesionales como de la sociedad a medida que aplique más intervenciones basadas en la investigación, de esta manera habrá una mayor necesidad de crear conocimiento potenciando la enfermería como disciplina humanista y revelando el carácter autónomo y social que la profesión posee.El propósito del siguiente artículo es narrar desde la mirada de una enfermera la experiencia de realizar una investigación cualitativa con mujeres con enfermedad renal crónica en una unidad de diálisis de un hospital público de la Comunidad de Madrid. (AU)

Research is the platform for nursing to contribute to the quality and management of patient care. Nursing will become visible in the eyes of the professionals themselves as well as of society as it applies more research-based interventions, in this way there will be a greater need to create knowledge, promoting nursing as a humanistic discipline and revealing the autonomous and social character that the profession possesses.The purpose of the following article is to narrate from the perspective of a nurse the experience of conducting qualitative research with women with chronic kidney disease in a dialysis unit of a public hospital in the Community of Madrid. (AU)

La experiencia de ser portador de un catéter venoso central para hemodiálisis: estudio cualitativo / The experience of having a central venous catheter for hemodialysis: qualitative study

Introducción: La enfermedad renal crónica (ERC), produce una pérdida gradual e irreversible de la función de los riñones. Sus modalidades de tratamiento son invasivas y la existencia de un acceso vascular adecuado para hemodiálisis es fundamental para garantizar la supervivencia de los pacientes. Las diferencias de género existen con respecto a la epidemiología, la evolución y el pronóstico de las enfermedades crónicas del riñón, y pueden existir diferencias en las respuestas y perspectivas de las mujeres ante la ERC. Objetivos: Describir la experiencia de los pacientes con enfermedad renal crónica en hemodiálisis; su experiencia como portadores de un catéter venoso central (CVC), y si existen diferencias de género en las experiencias y vivencias de los portadores/as. Material y Método: Estudio cualitativo fenomenológico. Se aplicó un muestreo por propósito, se recogieron datos a través de entrevistas en profundidad, y se aplicó un análisis temático. Resultados: La enfermedad renal crónica supone un gran impacto en sus vidas. Todos los pacientes narran su preferencia sobre el CVC, son conscientes de su implicación en su tratamiento y en su expectativa vital, y se preocupan de su viabilidad y seguridad. Conclusiones: Existen diferencias de género, sobre todo en el impacto de la enfermedad y el tratamiento en el trabajo y en su nivel de autonomía y actividad

Introduction: Chronic Kidney Disease (CKD) is a disease that involves the gradual and irreversible loss of kidney function. The existence of adequate vascular access for hemodialysis is fundamental to guarantee a survival of the patients. Gender differences exist with respect to the epidemiology, evolution and prognosis of chronic kidney diseases. There are differences in the responses and perspectives of women on CKD. Objectives: To describe the experience of patients with CKD on hemodialysis; their experience as holders of a central venous catheter (CVC), and if there are gender differences in the responses and experiences of the holders. Material and Method: Qualitative phenomenological study was applied. Purposeful sampling was used and in-depth interviews was applied by researchers. Also, thematic analysis was used to qualitative data analysis. Results: CKD has a great impact on the patients’ lives. All patients report their preference about the use of CVC, are aware of the involvement in the treatment and their life expectancy, and are concerned about the viability and safety. Conclusions: There are gender differences, especially in the impact of the disease and treatment at work and in their level of autonomy and activity

El paciente crítico en situación terminal / Critical patients at the end-of-the-life care

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Uso del acido tranexámico en hemorragias en zona de combate / Use of tranexamic acid in hemorrhages in combat zone

El control de la hemorragia es uno de los aspectos más importantes en el tratamiento de los heridos en zona de operaciones. A lo largo de los últimos años, en conflictos como el de Irak y Afganistán se han desarrollado nuevos protocolos de tratamiento por la necesidad de mejorar el pronóstico de las bajas. La sanidad militar de varios países, entre ellos España, ha realizado diferentes estudios en relación con el tema. Este trabajo presenta una revisión bibliográfica del uso del ácido tranexámico como favorecedor en el control de las grandes hemorragias (AU)

Controlling bleeding is one of the most important aspects when treating casualties in the area of operations in a conflict zone. Conflicts in Irak and Afghanistan have spurred the development of new treatment guides to improve the prognosis of casualties over the past few years. The Military Health of several countries, amongst them Spain, have researched along these lines to improve health care for patients in areas of operations. The present work is a bibliographic revision of the use of tranexamic acid to favor control over massive bleeding (AU)

Dificultades para ofrecer cuidados al final de la vida en las unidades de cuidados intensivos. La perspectiva de enfermería / End of life care difficulties in intensive care units. The nurses’ perspective

Objetivo: Describir las dificultades percibidas por el personal de enfermería para prestar cuidados al final de la vida al paciente grave dentro de la unidad de cuidados intensivos (UCI). Método: Estudio cualitativo fenomenológico descriptivo. Se aplicó un muestreo por propósito y de bola de nieve. Las enfermeras debían tener una experiencia mínima de 1 año en UCI. Se incluyeron 22 participantes. Los datos se recopilaron mediante entrevistas en profundidad (no estructuradas y semiestructuradas) y notas de campo del investigador. El análisis se realizó mediante la propuesta de Giorgi. Resultados: Se identificaron tres temas: dificultades académico-culturales, relacionadas con la orientación curativa de la UCI y la falta de formación en cuidados al final de la vida; dificultades estructurales-arquitectónicas, relacionadas con la falta de espacio e intimidad para el paciente y la familia en los últimos momentos; y dificultades psicoemocionales, relacionadas con el distanciamiento emocional como estrategia aplicada por el personal de enfermería. Conclusiones: El personal de enfermería necesita formación sobre los cuidados al final de la vida mediante el uso de guías o protocolos y el desarrollo de estrategias de afrontamiento, junto a un cambio en la organización de la UCI orientado al cuidado terminal de los pacientes graves y a la atención de la familia (AU)

Objective: To describe the difficulties perceived by nursing staff in the delivery of end-of-life care to critically ill patients within intensive care units (ICU). Method: A descriptive phenomenological qualitative study was performed. A purposeful and snowball sampling of nursing staff with at least 1 year's previous experience working in an ICU was conducted. Twenty-two participants were enrolled. Data collection strategies included in-depth unstructured and semi-structured interviews and researcher's field notes. Data were analysed using the Giorgi proposal. Results: Three themes were identified: academic-cultural barriers, related to the care orientation of the ICU and lack of training in end of life care; architectural-structural barriers, related to the lack of space and privacy for the patient and family in the last moments of life; and psycho-emotional barriers, related to the use of emotional detachment as a strategy applied by nursing staff. Conclusions: Nursing staff need proper training on end-of-life care through the use of guidelines or protocols and the development of coping strategies, in addition to a change in the organisation of the ICU dedicated to the terminal care of critically ill patients and family support (AU)

La limitación terapéutica en la Unidad de Cuidados Intensivos / Therapeutic limitation of intenseve care unit

La limitación terapéutica es una práctica relativamente frecuente dentro de las Unidades de Cuidados Intensivos. Existen distintos tipos de limitación terapéutica, y se puede clasificar al paciente en función de las medidas susceptibles de retirarse o no iniciarse. Entre dichas medidas, cabe destacar la retirada de la ventilación mecánica junto con la analgesia y la sedación aplicadas al final de la vida del paciente (AU)

The therapeutic limitation is a relatively common in Intensive Care Units practice. There are different types of therapeutic limitation, and the patient can be classified according to measures likely to withdraw or not start. Among such measures include removal of stand mechanical ventilation with the analgesia and sedation applied to the end of life of the patient (AU)

Vivencias del personal de Enfermería en los cuidadospaliativos de pacientes en situación crítica y terminal / Experiences of the nursing personnel in charge of palliative care of critical and terminal patients

Objetivo: interpretar y analizar las vivencias del personal de Enfermería de la Unidad de Reanimación Postanestésica del Hospital General Universitario Gregorio Marañón (HGUGM) que administran cuidados paliativosa pacientes en situación crítica y terminal. Métodos: la opción epistemológica seleccionada para el estudio es de naturaleza cualitativa, con una metodología fenomenológica-interpretativa, realizado mediante entrevistas en profundidad semiestructuradas, individuales y transversales, con una duración de entre 30-40 minutos, realizándose un muestreo por propósito sobre enfermeras y auxiliares, delimitando el tamaño muestral por la saturación de los datos recogidos. Los años de experiencia laboral en la unidad fue el criterio de selección muestral, distinguiendo tres grupos: menos de cinco años, entre 5-10 años y más de 10 años de experiencia. Las entrevistas se transcribieron empleando dos programas informáticos: Express Scribe® y el Dragon Naturally Speaking 10.0®. Se codificaron y se analizó su contenido con el método de Colaizzi. Resultados: las unidades o categorías de análisis generadas durante la investigación han sido: el fracaso terapéutico, los cuidados paliativos y las barreras que dificultan su prestación, pudiendo distinguirse en cada una de ellas diversos tipos de emociones y de factores intrínsecos y extrínsecos que podían condicionar la aceptación del fracaso y repercutir sobre la integridad y contenido de los cuidados (..) (AU)

Objective: to interpret and analyze the experiences of nursing personnel in a Post-anesthesia Recovery Unit at the Gregorio Marañón of Madrid teaching hospital (HGUGM) who administer palliative care to critical or terminal patients. Methods: the epistemological option selected for the study is a qualitative, phenomenological-interpretative methodology with in depth semistructured, individual, cross-sectional interviews, with a duration of 30-40 minutes. A multi-purpose sampling of nurses and nursing assistants, delimiting the sample size by the saturation of the collected data. The years of work experience in the unit was the sample selection criterion, differentiating three groups: less than 5 years, between 5-10 years and more than 10 years of experience. The interviews were transcribed using two computer programs: Express Scribe® and Dragon NaturallySpeaking 10.0®. The contents were codified and analysed using the Colaizzi method. Results: the units or categories of analysis generated during the investigation were: treatment failure, palliative care and barriers to its delivery, being able to distinguished in each of them various types of emotions and intrinsic and extrinsic factors that could condition the acceptance of failure and have an impact on the integrity and content of palliative care administered. Conclusion: the experiences of professionals and nursing assistants may condition acceptance of failure, impacting on the integrity and content of palliative care; the greater the degree of acceptance of failure, the greater the coverage of care provided. The conditioning of palliative care is influenced by the sum of factors present in the perception of treatment failure and the existence of institutional, academic and clinical barriers (AU)