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1.
J Pediatr Intensive Care ; 13(2): 127-133, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38919699

RESUMEN

Objectives This article described parents' experience and identifies outcomes important to parents following their child's critical illness. Methods Semistructured interviews with 22 female and 4 male parents representing 26 critically ill children with predominately neurologic and respiratory diagnoses. Most children were younger than 5 years at discharge with a median (interquartile range) of 2 (2.0-3.0) years from discharge to interview. Results Many children returned home with life-altering physical and cognitive disabilities requiring months to years of rehabilitation. Parents remembered feeling unprepared and facing an intense, chaotic time when the child first returned home. They described how they suddenly had to center their daily activities around the child's needs amidst competing needs of siblings and partners, and in some cases, the medicalization of the home. They recounted negotiating adjustments almost daily with insurance agencies, medical doctors and therapists, employers, the child, and other family members to keep the family functioning. In the long term, families developed a new norm, choosing to focus on what the child could still do rather than what they could not. Even if the child returned to baseline, parents remembered the adjustments made to keep the child alive and the family functioning. Conclusion Heightened awareness of family experiences after pediatric critical illness will allow health care providers to improve family preparedness for the transition from hospital to home.

2.
Dis Colon Rectum ; 67(2): 264-272, 2024 Feb 01.
Artículo en Inglés | MEDLINE | ID: mdl-37787524

RESUMEN

BACKGROUND: Diverticulitis is a complex, heterogeneous disease process that affects a diverse population of patients. In the elective management of this disease, treatment guidelines have shifted toward patient-centered, individualized decision-making. It is not known what challenges surgeons face as they approach these nuanced treatment decisions in practice. OBJECTIVE: This study aimed to identify opportunities to support colorectal surgeons in elective diverticulitis treatment. DESIGN: This was a qualitative study using standardized, semistructured interviews to explore the perspectives of 29 colorectal surgeons recruited using a purposive sampling technique. Data were analyzed using an "open-coding" approach. SETTINGS: Interviews with a national sample of colorectal surgeons were conducted from a single center using an online video platform. PATIENTS: This study did not involve patients. MAIN OUTCOME MEASURES: Interviews explored surgeons' experiences treating diverticulitis in the elective setting, focusing on perceived challenges in providing patient-centered care as well as opportunities to improve treatment decisions. RESULTS: Our qualitative analysis identified an overarching challenge in elective diverticulitis management for surgeons: difficulty ensuring adequate patient understanding of the risks and benefits of various treatments. This was thought to be due to 1) preexisting patient expectations about treatment and 2) lack of data regarding long-term treatment outcomes. Surgeons identified 2 potential opportunities to combat these challenges: 1) patient education and 2) additional research regarding treatment outcomes, with potential for the development of diverticulitis-specific decision support tools. LIMITATIONS: These results are based on a national sample of colorectal surgeons, but they capture qualitative data that is not intended to provide generalizable findings. CONCLUSIONS: As surgeons work toward providing individualized care for diverticulitis patients, they find it difficult to adequately counsel patients regarding the patient-specific risks of various treatments. The results of this study identify specific contributors to this problem as well as potential targets for intervention, which can guide future efforts to support surgeons in providing patient-centered care. See Video Abstract . DESAFOS Y OPORTUNIDADES EN EL MANEJO ELECTIVO DE LA DIVERTICULITIS PERSPECTIVAS DE UNA MUESTRA NACIONAL DE CIRUJANOS COLORRECTALES: ANTECEDENTES:La diverticulitis es un proceso patológico complejo y heterogéneo que afecta a una población diversa de pacientes. En el manejo electivo de esta enfermedad, las pautas de tratamiento se han desplazado hacia una toma de decisiones individualizada y centrada en el paciente. No se sabe qué desafíos enfrentan los cirujanos al abordar estas decisiones de tratamiento matizadas en la práctica.OBJETIVO:Identificar oportunidades para apoyar a los cirujanos colorrectales en el tratamiento electivo de la diverticulitis.DISEÑO:Este fue un estudio cualitativo que utilizó entrevistas semiestructuradas estandarizadas para explorar las perspectivas de 29 cirujanos colorrectales reclutados mediante una técnica de muestreo intencional. Los datos se analizaron utilizando un enfoque de "codificación abierta".ESCENARIO:Las entrevistas con una muestra nacional de cirujanos colorrectales se realizaron desde un solo centro utilizando una plataforma de video en línea.PRINCIPALES MEDIDAS DE RESULTADO:Las entrevistas exploraron las experiencias de los cirujanos en el tratamiento de la diverticulitis en el entorno electivo, centrándose en los desafíos percibidos en la prestación de atención centrada en el paciente, así como en las oportunidades para mejorar las decisiones de tratamiento.RESULTADOS:Nuestro análisis cualitativo identificó un desafío general en el manejo de la diverticulitis electiva para los cirujanos: la dificultad para asegurar que el paciente comprenda adecuadamente los riesgos y beneficios de los diversos tratamientos. Se pensó que esto se debía a 1) las expectativas preexistentes del paciente sobre el tratamiento y 2) la falta de datos sobre los resultados del tratamiento a largo plazo. Los cirujanos identificaron dos oportunidades potenciales para combatir estos desafíos: 1) educación del paciente y 2) investigación adicional sobre los resultados del tratamiento, con potencial para el desarrollo de herramientas de apoyo a la toma de decisiones específicas para la diverticulitis.LIMITACIONES:Estos resultados se basan en una muestra nacional de cirujanos colorrectales, pero capturan datos cualitativos que no pretenden proporcionar hallazgos generalizables.CONCLUSIONES:A medida que los cirujanos trabajan para brindar atención individualizada a los pacientes con diverticulitis, les resulta difícil aconsejar adecuadamente a los pacientes sobre los riesgos específicos de los pacientes para los diversos tratamientos. Los resultados de este estudio identifican contribuyentes específicos a este problema, así como objetivos potenciales para la intervención, que pueden guiar los esfuerzos futuros para ayudar a los cirujanos a brindar atención centrada en el paciente. (Traducción-Dr. Felipe Bellolio ).


Asunto(s)
Neoplasias Colorrectales , Diverticulitis , Cirujanos , Humanos , Diverticulitis/cirugía , Diverticulitis/etiología , Resultado del Tratamiento , Colectomía/métodos , Neoplasias Colorrectales/etiología
3.
PLoS One ; 18(9): e0290540, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37682878

RESUMEN

Acceptance of the COVID-19 vaccination becomes more critical as new variants continue to evolve and the United States (US) attempts to move from pandemic response to management and control. COVID-19 stands out in the unique way it has polarized patients and generated sustained vaccine hesitancy over time. We sought to understand differences in perceptions and acceptance of COVID-19 vaccination between vaccine hesitant and non-hesitant patients, with the goal of informing communication and implementation strategies to increase uptake of COVID-19 vaccines in Veteran and non-Veteran communities. This qualitative study used interview data from focus groups conducted by the Department of Veterans Affairs (VA) and the University of Utah; all focus groups were conducted using the same script March-July 2021. Groups included forty-six United States Veterans receiving care at 28 VA facilities across the country and 166 non-Veterans across Utah for a total of 36 one-hour focus groups. We identified perceptions and attitudes toward COVID-19 vaccination through qualitative analysis of focus group participant remarks, grouping connections with identified themes within domains developed based on the questions asked in the focus group guide. Responses suggest participant attitudes toward the COVID-19 vaccine were shaped primarily by vaccine attitude changes over time, impacted by perceived vaccine benefits, risks, differing sources of vaccine information and political ideology. Veterans appeared more polarized, being either largely non-hesitant, or hesitant, whereas non-Veterans had a wider range of hesitancy, with more participants identifying minor doubts and concerns about receiving the vaccine, or simply being altogether unsure about receiving it. Development of COVID-19 vaccine communication strategies in Veteran and non-Veteran communities should anticipate incongruous sources of information and explicitly target community differences in perceptions of risks and benefits associated with the vaccine to generate candid discussions and repair individuals' trust. We believe this could accelerate vaccine acceptance over time.


Asunto(s)
COVID-19 , Vacunas , Humanos , Vacunas contra la COVID-19 , COVID-19/prevención & control , Vacunación , Transporte Biológico
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